| Author | Title | Year | Journal/Proceedings | Reftype | DOI/URL |
|---|---|---|---|---|---|
| Ghazali, N., Roe, B., Lowe, D., Tandon, S., Jones, T., Shaw, R., Risk, J. and Rogers, S.N. | Using the patients concerns inventory for distress screening in post-treatment head and neck cancer survivors. | 2017 | Journal of cranio-maxillo-facial surgery : official publication of the European Association for Cranio-Maxillo-Facial Surgery Vol. 45, pp. 1743-1748 |
article | DOI |
| Abstract: Cancer patients can experience significant distress during their cancer trajectory, which impacts upon clinical outcomes and quality of life. Screening for distress using holistic assessments can help identify and address unmet concerns/needs. The purpose of this study was to evaluate the relationship between concerns and distress, and the impact of distress on clinic outcomes in post-treatment head and neck cancer patients. 170 patients attending routine follow-up clinics were prospectively recruited. All patients completed the Patient Concerns Inventory (PCI) and the Distress thermometer (DT) at preconsultation. The rate of significant distress (i.e. DT cut-off score ≥4) was 36% (62/170). Significantly distressed patients selected more items overall than patients without distress (mean, median (QR) of 5.40, 5 (2-8) vs 2.61, 2 (0-4), p < 0.001). Significant distress was most strongly associated with Physical and Functional well-being (p < 0.001) and Psychological and Emotional well-being domains (p = 0.001). On balance, very little difference was noted between cut-off points of either ≥4 or ≥5 PCI items of concern selected. Both cut-off points demonstrated an acceptable level of sensitivity, specificity and predictive values for significant distress. Consultations were longer with increasing numbers of concerns. Just over one-third of patients are significantly distressed. They were more likely to express a higher number of concerns. A cutoff score ≥4 or ≥5 PCI items selected can identify those at risk of significant distress. Concerns causing significant distress were related to emotional/psychological issues and physical function. | |||||
BibTeX:
@article{Ghazali2017,
author = {Ghazali, Naseem and Roe, Brenda and Lowe, Derek and Tandon, Sank and Jones, Terry and Shaw, Richard and Risk, Janet and Rogers, Simon N},
title = {Using the patients concerns inventory for distress screening in post-treatment head and neck cancer survivors.},
journal = {Journal of cranio-maxillo-facial surgery : official publication of the European Association for Cranio-Maxillo-Facial Surgery},
year = {2017},
volume = {45},
pages = {1743--1748},
doi = {https://doi.org/10.1016/j.jcms.2017.07.009}
}
|
|||||
| Rogers, S.N. and Barber, B. | Using PROMs to guide patients and practitioners through the head and neck cancer journey. | 2017 | Patient related outcome measures Vol. 8, pp. 133-142 |
article | DOI |
| Abstract: The measurement of patient-reported outcome measures (PROMs) following head and neck cancer (HNC) has the capacity to substantially enhance the care of patients and their care-givers following the diagnosis and treatment of HNC. Literature concerning PROMs has increased exponentially in the past 2 decades, producing a vast array of data upon which the multidisciplinary team can reflect. For this review, "Handle On QOL" has been used as a source of references to illustrate the points raised. PROMs are contextualized by considering the clinically-distinct key stages that cancer patients endure: diagnosis, treatment, acute toxicity, early recovery, late effects, recurrence, and palliation. The PROMs are considered in six main categories: 1) those addressing cornucopia of issues not specific to cancer; 2) those addressing issues common to all cancers; 3) questionnaires with items specific to HNC; 4) questionnaires that focus on a particular aspect of head and neck function; 5) those measuring psychological concerns, such as depression, anxiety, or self-esteem; and 6) item prompt lists. Potential benefits of PROMs in clinical practice are discussed, as are barriers to use. The way forward in integrating PROMs into routine HNC care is discussed with an emphasis on information technology. | |||||
BibTeX:
@article{Rogers2017b,
author = {Rogers, Simon N and Barber, Brittany},
title = {Using PROMs to guide patients and practitioners through the head and neck cancer journey.},
journal = {Patient related outcome measures},
year = {2017},
volume = {8},
pages = {133--142},
doi = {https://doi.org/10.2147/PROM.S129012}
}
|
|||||
| Ghazali, N., Kanatas, A., Scott, B., Lowe, D., Zuydam, A. and Rogers, S.N. | Use of the Patient Concerns Inventory to identify speech and swallowing concerns following treatment for oral and oropharyngeal cancer. | 2012 | The Journal of laryngology and otology Vol. 126, pp. 800-808 |
article | DOI |
| Abstract: The Patient Concerns Inventory is a holistic, self-reported screening tool for detecting unmet needs in head and neck cancer patients. This study aimed to assess its value in screening for self-perceived swallowing and speech concerns, and in facilitating multidisciplinary supportive care. The Patient Concerns Inventory and the University of Washington Quality of Life questionnaire were completed by 204 post-treatment patients attending routine out-patient review clinics, and those with speech or swallowing issues were identified. Swallowing and speech issues were respectively reported by 21 and 7 per cent of University of Washington questionnaire respondents and by 17 and 13 per cent of Patient Concerns Inventory respondents. The two surveys combined indicated that speech or swallowing issues arose in 39 per cent of consultations (n = 178), involving 48 per cent of patients (n = 97). Of these 97 patients, 74 were known to the speech and language therapist. The remaining 23 patients had their concerns discussed in the clinic; three were referred on, and were assessed by the speech and language therapist and given appropriate interventions. The use of both surveys concurrently enabled all patients with swallowing or speech issues to discuss these concerns in the clinic and to access appropriate multidisciplinary interventions. | |||||
BibTeX:
@article{Ghazali2012a,
author = {Ghazali, N and Kanatas, A and Scott, B and Lowe, D and Zuydam, A and Rogers, S N},
title = {Use of the Patient Concerns Inventory to identify speech and swallowing concerns following treatment for oral and oropharyngeal cancer.},
journal = {The Journal of laryngology and otology},
year = {2012},
volume = {126},
pages = {800--808},
doi = {https://doi.org/10.1017/S0022215112001107}
}
|
|||||
| Ghazali, N., Roe, B., Lowe, D. and Rogers, S.N. | Uncovering patients' concerns in routine head and neck oncology follow up clinics: an exploratory study. | 2013 | The British journal of oral & maxillofacial surgery Vol. 51, pp. 294-300 |
article | DOI |
| Abstract: The Patient Concerns Inventory (PCI) is a tool that enables patients to highlight issues they wish to discuss, and helps to uncover concerns that might otherwise be missed. Previous PCI studies have involved direct observation of a consultation by one assessor using a coding method based rigidly on items listed on the inventory. This pilot study explores the feasibility of developing a standardised method of scoring which can be used to evaluate it. We prospectively recruited 40 disease-free patients attending 42 routine outpatient consultations after treatment for head and neck cancer. Before the consultation they completed the University of Washington quality of life questionnaire and the PCI. Nineteen consultations were audio-recorded and transcribed, and 2 assessors used a thematic framework to analyse the content of the consultation to find the number and types of concerns, the professionals involved, and the clinical outcomes. The assessors were in agreement about 80% (65/81) of the audio-recordings. The mean number of items of concern highlighted on the PCI before consultation was 5.95, median (IQR) 4(3-8) in contrast to 6.47, median (IQR) 6(4-9) for those discussed; for involvement of professionals it was 0.74, median (IQR) 0(0-1) in contrast to 2.63, median (IQR) 3(1-4), respectively. We identified 4 new themes for the working thematic framework, which provided a dynamic, standardised, and comprehensive approach based on the observation and responses of those studied. This approach gave an insight into the way the PCI mediates consultations, and how patients do not always understand the support that specific professionals can provide. Overall, patients were satisfied with the consultations. | |||||
BibTeX:
@article{Ghazali2013,
author = {Ghazali, N and Roe, B and Lowe, D and Rogers, S N},
title = {Uncovering patients' concerns in routine head and neck oncology follow up clinics: an exploratory study.},
journal = {The British journal of oral & maxillofacial surgery},
year = {2013},
volume = {51},
pages = {294--300},
doi = {https://doi.org/10.1016/j.bjoms.2012.08.002}
}
|
|||||
| Campana, J.P. and Meyers, A.D. | The surgical management of oral cancer. | 2006 | Otolaryngologic clinics of North America Vol. 39, pp. 331-348 |
article | DOI |
| Abstract: Oral cavity cancers represent an area of head and neck oncology with some unique and interesting management themes. In spite of a significant paradigm shift in the treatment of many head and neck cancers toward us-ing primary chemoradiation, this treatment is not frequently applied to the oral cavity. Small cancers of the oral cavity are usually managed by surgery alone. Larger cancers are usually treated with primary surgery followed by chemoradiation. Neck treatment is offered to patients who have a greater than 20% chance of having lymph node metastasis or who have neck disease at the time of presentation. Neck treatment may involve surgery, radiation therapy, or both. Reconstruction of surgical defects of the oral cavity runs the gamut of techniques from the most simple to the most complex three-dimensional microvascular composite flaps. A multidisciplinary setting with a tumor board and multiple supportive services provides the best care for patients who have advanced-stage cancers. | |||||
BibTeX:
@article{Campana2006,
author = {Campana, John P and Meyers, Arlen D},
title = {The surgical management of oral cancer.},
journal = {Otolaryngologic clinics of North America},
year = {2006},
volume = {39},
pages = {331--348},
doi = {https://doi.org/10.1016/j.otc.2005.11.005}
}
|
|||||
| Ghazali, N., Kanatas, A., Bekiroglu, F., Scott, B., Lowe, D. and Rogers, S.N. | The Patient Concerns Inventory: a tool to uncover unmet needs in a cancer outpatient clinic | 2013 | The Bulletin of the Royal College of Surgeons of England Vol. 95(3), pp. 1-6 |
article | DOI |
| Abstract: The Patient Concerns Inventory (PCI) is a holistic, patient reported tool that aids in identifying concerns and issues. it is a 55-item checklist of issues that may be grouped into categories of general function, specific head and neck function, emotional-psychological and others, which include finances, treatment related matters and social care. The PCI also gives patients an opportunity to identify from a list of 15 multidisciplinary team (MDT) members whom they would like to see or be referred on to. | |||||
BibTeX:
@article{ghazali2013patient,
author = {Ghazali, N and Kanatas, A and Bekiroglu, F and Scott, B and Lowe, D and Rogers, Simon N},
title = {The Patient Concerns Inventory: a tool to uncover unmet needs in a cancer outpatient clinic},
journal = {The Bulletin of the Royal College of Surgeons of England},
publisher = {The Royal College of Surgeons of England},
year = {2013},
volume = {95},
number = {3},
pages = {1--6},
doi = {https://doi.org/10.1308/147363513x13500508919899}
}
|
|||||
| Kanatas, A., Ghazali, N., Lowe, D. and Rogers, S.N. | The identification of mood and anxiety concerns using the patients concerns inventory following head and neck cancer. | 2012 | International journal of oral and maxillofacial surgery Vol. 41, pp. 429-436 |
article | DOI |
| Abstract: The aim of this study was to investigate the concurrent use of the Patient Concerns Inventory (PCI) and the University of Washington Quality of life instruments (UW-QOL), as a means of identifying mood and anxiety concerns in patients following head and neck cancer treatment. From August 2007 to July 2009, 204 patients (454 clinic appointments) attending one consultant's oncology review clinic completed the UW-QOLv4 and PCI prior to their consultation. Before entering consultations, 17% (79/454) of patients reported problems with mood and 20% (89/454) reported problems with anxiety on the UW-QOL. Regarding the items raised by patients using the PCI prior to consultation, 'mood' was raised in 10% (46/454), 'anxiety' in 13% (58/454) and 'depression' in 10% (44/454) of cases. In 32% (145/454) of consultations, 44% (89/204) patients had reported significant anxiety or mood problems on the UW-QOL, or highlighted issues of anxiety, mood and/or depression on the PCI for discussion. Patients completing the PCI were more often referred to the clinical psychologist and to the emotional support worker. The results showed that the combination of the UW-QOL questionnaire and the PCI provide a practical means of screening for psychological distress in clinics. | |||||
BibTeX:
@article{Kanatas2012,
author = {Kanatas, A and Ghazali, N and Lowe, D and Rogers, S N},
title = {The identification of mood and anxiety concerns using the patients concerns inventory following head and neck cancer.},
journal = {International journal of oral and maxillofacial surgery},
year = {2012},
volume = {41},
pages = {429--436},
doi = {https://doi.org/10.1016/j.ijom.2011.12.021}
}
|
|||||
| Aguilar, M.L., Sandow, P., Werning, J.W., Brenneman, L. and Psoter, W.J. | The Head and Neck Cancer Patient Concern Inventory© : Patient Concerns' Prevalence, Dental Concerns' Impact, and Relationships of Concerns with Quality of Life Measures. | 2017 | Journal of prosthodontics : official journal of the American College of Prosthodontists Vol. 26, pp. 186-195 |
article | DOI |
| Abstract: The Patient Concern Inventory© (PCI) is a clinical tool of self-reported patient concerns to be used by the clinician to structure the patient-oncologist visit. It was developed in the United Kingdom to address the issues of quality of life (QOL) in head and neck cancer (HNC) patients. The purpose of the study reported here was to determine the prevalence of PCI© items, the associations between PCI© items and QOL, and to explore the importance of oral/dental issues in the patient's well-being. The PCI© and the University of Washington (UW-QOLv4) instruments were self-administered by an HNC population in a cross-sectional study. Following an a priori sample size estimate, consecutive HNC patients attending at the University of Florida's Oral Medicine and the ENT Clinics had the study described, eligibility assessed, and if eligible, were invited to participate in the study. Participants completed the PCI© and UW-QOL. PCI© issues prevalence was determined, and for those with a ≥10% prevalence: 1) Fisher's exact test was used to test for statistical differences between treatments, and 2) multivariable regression was used to test each of the prevalent PCI© issues across four QOL measures, health in the last 7 days, overall QOL in the last 7 days, and the physical and social domain scores. Twenty of 45 PCI© issues had a prevalence ≥10%. Of the 15 prevalent items statistically associated with a QOL measure, four issues are the clinical responsibility of the dental profession: 1) chewing/eating, 2) dental health/teeth, 3) mouth opening, and 4) salivation. An additional four (eight total, 50%) are of clinical concern for dental clinicians: 5) pain in head/neck, 6) swallowing, 7) speech/voice/being understood, and 8) taste. Dental concerns represent almost half of all PCI© concerns observed in 10% or more of the sample patients. Prosthodontists should support our maxillofacial prosthodontics specialists in joining other oral oncologists and advocate for comprehensive, integrated dental support for HNC patients by assuring dental involvement/inclusion with the multidisciplinary oncology team and a research agenda to established best patient-centered outcomes. | |||||
BibTeX:
@article{Aguilar2017,
author = {Aguilar, Maria L and Sandow, Pamela and Werning, John W and Brenneman, Lia and Psoter, Walter J},
title = {The Head and Neck Cancer Patient Concern Inventory© : Patient Concerns' Prevalence, Dental Concerns' Impact, and Relationships of Concerns with Quality of Life Measures.},
journal = {Journal of prosthodontics : official journal of the American College of Prosthodontists},
year = {2017},
volume = {26},
pages = {186--195},
doi = {https://doi.org/10.1111/jopr.12496}
}
|
|||||
| Rogers, S.N., El-Sheikha, J. and Lowe, D. | The development of a Patients Concerns Inventory (PCI) to help reveal patients concerns in the head and neck clinic. | 2009 | Oral oncology Vol. 45, pp. 555-561 |
article | DOI |
| Abstract: The purpose of the Patients Concerns Inventory (PCI) is to identify the concerns that patients would like to discuss during their consultation. The PCI covers a range of issues including hearing, intimacy, fatigue, financial/benefits, PEG tube, relationships, regret, support for family, and wound healing. It also lists MDT members that patients would like to see or be referred on to. The PCI is completed using a touch-screen computer (TST) immediately before consultation. Responses are networked into the consultation room. A 28 weeks pilot for one consultant ran from August 2007 with 123 (of maximum 150) patients. The median time to complete the TST was 8min. Patients most frequently selected fear of recurrence (37%), dental health/teeth (27%), chewing (24%), pain in head/neck (20%), fatigue/tiredness (19%), saliva (18%) and swallowing (18%). The two MDT members they wished to see were dentist (19%) and speech/language therapist (10%). The vast majority felt the PCI made a difference (quite a bit/very much) to their consultation as it made it 'a bit more personal', 'reminds them of the points they want discussed', 'allows the consultation to get straight to the point'. Although the PCI can raise many issues it did not noticeably prolong the consultation (median 8min with PCI, 7min without PCI). The Patients Concerns Inventory (PCI) helps focus the consultation onto patient needs and promotes multidisciplinary care. Following this very successful pilot the PCI is being rolled out to other consultants in the H & N clinic. | |||||
BibTeX:
@article{Rogers2009a,
author = {Rogers, S N and El-Sheikha, J and Lowe, D},
title = {The development of a Patients Concerns Inventory (PCI) to help reveal patients concerns in the head and neck clinic.},
journal = {Oral oncology},
year = {2009},
volume = {45},
pages = {555--561},
doi = {https://doi.org/10.1016/j.oraloncology.2008.09.004}
}
|
|||||
| Rogers, S.N., Lowe, D. and Kanatas, A. | Suitability of the Patient Concerns Inventory as a holistic screening tool in routine head and neck cancer follow-up clinics. | 2016 | The British journal of oral & maxillofacial surgery Vol. 54, pp. 415-421 |
article | DOI |
| Abstract: In patients with cancer of the head and neck, efficient screening for problems can improve care and the management of resources. We explored use of the Patient Concerns Inventory (PCI-HN) as a holistic screening tool in the follow up of these patients. Between August 2007 and January 2013, 464 patients completed the PCI-HN and the University of Washington Quality of Life questionnaire version 4 (UWQoL) immediately before their routine follow-up consultations. The median (IQR) number of items selected on the inventory was 3 (1-6). This was associated (p<0.001) with the number of serious problems (dysfunction) in the 12 UWQoL domains (Spearman's correlation, rs=0.51), overall QoL (rs=-0.41), and the 2 UWQoL subscale scores of physical (rs=-0.46) and social-emotional (rs=-0.53) function. Binary regression to predict an overall outcome of "less than good" indicated that use of the PCI could be better than just recording clinical characteristics. Some patients however, chose few PCI items and had numerous problems. The inventory may have a role in the screening of patients with cancer of the head and neck, particularly in relation to social-emotional function and overall QoL, and may have added value when used with the UWQoL-v4. The total number of PCI items selected is a useful predictor of QoL. Further research is required to confirm suitable limits, and to find out whether additional support and repeated use of the inventory over time improve QoL. | |||||
BibTeX:
@article{Rogers2016a,
author = {Rogers, S N and Lowe, D and Kanatas, A},
title = {Suitability of the Patient Concerns Inventory as a holistic screening tool in routine head and neck cancer follow-up clinics.},
journal = {The British journal of oral & maxillofacial surgery},
year = {2016},
volume = {54},
pages = {415--421},
doi = {https://doi.org/10.1016/j.bjoms.2016.01.018}
}
|
|||||
| Rogers, S.N. | Quality of life for head and neck cancer patients--has treatment planning altered? | 2009 | Oral oncology Vol. 45, pp. 435-439 |
article | DOI |
| Abstract: In the last decade quality of life data has emerged as a valid outcome measure and a means of capturing the patient's perspective following head and neck cancer. This view can be different to what doctors and other members of the multidisciplinary team might think. Also this data can be more discriminative than other outcome measures such as morbidity and objective measurements of dysfunction. In this chapter, the role of quality of life in the treatment decision process is discussed and examples of how QOL data have helped shaped clinical practice are given. | |||||
BibTeX:
@article{Rogers2009,
author = {Rogers, Simon N},
title = {Quality of life for head and neck cancer patients--has treatment planning altered?},
journal = {Oral oncology},
year = {2009},
volume = {45},
pages = {435--439},
doi = {https://doi.org/10.1016/j.oraloncology.2008.11.006}
}
|
|||||
| Rogers, S. | Quality of Life and Patient Concerns in Oral Cancer | 2017 | Contemporary Oral Oncology, pp. 243-265 | incollection | DOI |
| Abstract: In this chapter the basic components of ‘quality of life’ assessment in oral cancer will be addressed in ten sections: 1. Why is quality of life an important outcome in oral cancer? |
|||||
BibTeX:
@incollection{Rogers2017,
author = {Rogers, Simon},
title = {Quality of Life and Patient Concerns in Oral Cancer},
booktitle = {Contemporary Oral Oncology},
publisher = {Springer},
year = {2017},
pages = {243--265},
doi = {https://doi.org/10.1007/978-3-319-43857-3_7}
}
|
|||||
| Ghazali, N., Roe, B., Lowe, D. and Rogers, S.N. | Patients concerns inventory highlights perceived needs and concerns in head and neck cancer survivors and its impact on health-related quality of life. | 2015 | The British journal of oral & maxillofacial surgery Vol. 53, pp. 371-379 |
article | DOI |
| Abstract: Currently, the head and neck cancer Patients' Concerns Inventory (HNC-PCI), a holistic, self-reported tool to help patients disclose needs and concerns during consultations, is not organised into domains. We used a Delphi approach to generate domains and applied them to an existing HNC-PCI database to assess association with health-related quality of life (HRQoL). The expert panel comprised 10 experts in head and neck cancer who were selected ad hoc. The HNC-PCI checklist was analysed and fed back to the panel for 3 rounds until consensus was achieved. Five domains were generated (A=Physical and functional; B=Psychological and emotional or spiritual well-being; C=Social care and well-being; D=Treatment-related; and E=Other) and were applied to a database compiled from 674 patients who had completed the PCI on 1276 occasions. On first completing the inventory (median 32 months after treatment) 81% selected items under domain A and 58% under domain B. Fewer items were selected/domain thereafter. Younger patients were more likely to select from domains B and C. Those treated by radiotherapy and adjuvant radiotherapy were more likely to select from domains A and C, respectively. Patients with laryngeal cancer tended to select from domain C, and those with poor HRQoL outcomes were significantly more likely to indicate more items of concern. The items selected under the HNC-PCI domains showed that certain clinical, pathological, and HRQoL factors were associated with specific patterns of needs or concerns. | |||||
BibTeX:
@article{Ghazali2015,
author = {Ghazali, N and Roe, B and Lowe, D and Rogers, S N},
title = {Patients concerns inventory highlights perceived needs and concerns in head and neck cancer survivors and its impact on health-related quality of life.},
journal = {The British journal of oral & maxillofacial surgery},
year = {2015},
volume = {53},
pages = {371--379},
doi = {https://doi.org/10.1016/j.bjoms.2015.01.022}
}
|
|||||
| Jungerman, I., Toyota, J., Montoni, N.P., Azevedo, E.H.M., Guedes, R.L.V., Damascena, A., Lowe, D., Vartanian, J.G., Rogers, S.N. and Kowalski, L.P. | Patient Concerns Inventory for head and neck cancer: Brazilian cultural adaptation. | 2017 | Revista da Associacao Medica Brasileira (1992) Vol. 63, pp. 311-319 |
article | DOI |
| Abstract: The purpose of this study was to translate, culturally validate and evaluate the Patients Concerns Inventory - Head and Neck (PCI-H&N) in a consecutive series of Brazilian patients. This study included adult patients treated for upper aerodigestive tract (UADT) cancer. The translation and cultural adaptation of the PCI-H&N followed internationally accepted guidelines and included a pretest sample of patients that completed the first Brazilian Portuguese version of the PCI. Use, feasibility and acceptability of the PCI were tested subsequently in a consecutive series of UADT cancer patients that completed the final Brazilian Portuguese version of the PCI and a Brazilian Portuguese version of the University of Washington Quality of Life Questionnaire (UW-QOL). Associations between physical and socio-emotional composite scores from the UW-QOL and the PCI were analyzed. Twenty (20) patients participated in the pretest survey (translation and cultural adaptation process), and 84 patients were analyzed in the cultural validation study. Issues most selected were: fear of cancer returning, dry mouth, chewing/eating, speech/voice/being understood, swallowing, dental health/teeth, anxiety, fatigue/tiredness, taste, and fear of adverse events. The three specialists most selected by the patients for further consultation were speech therapist, dentist and psychologist. Statistically significant relationships between PCI and UW-QOL were found. The translation and cultural adaptation of the PCI into Brazilian Portuguese language was successful, and the results demonstrate its feasibility and usefulness, making this a valuable tool for use among the Brazilian head and neck cancer population. | |||||
BibTeX:
@article{Jungerman2017,
author = {Jungerman, Ivy and Toyota, Julia and Montoni, Neyller Patriota and Azevedo, Elma Heitmann Mares and Guedes, Renata Ligia Vieira and Damascena, Aline and Lowe, Derek and Vartanian, José Guilherme and Rogers, Simon N and Kowalski, Luiz Paulo},
title = {Patient Concerns Inventory for head and neck cancer: Brazilian cultural adaptation.},
journal = {Revista da Associacao Medica Brasileira (1992)},
year = {2017},
volume = {63},
pages = {311--319},
doi = {https://doi.org/10.1590/1806-9282.63.04.311}
}
|
|||||
| Rogers, S.N., Clifford, N. and Lowe, D. | Patient and carer unmet needs: a survey of the British association of head and neck oncology nurses. | 2011 | The British journal of oral & maxillofacial surgery Vol. 49, pp. 343-348 |
article | DOI |
| Abstract: The aim of this survey was to ask members of the British Association of Head and Neck Oncology Nurses (BAHNON) about the identification of patients and carers unmet needs in the routine out-patient review clinic and the support services available during consultation. A national postal survey was sent out to the 210 current members of BAHNON in November 2009. Reminders were sent to non-responders in February 2010. The response rate was 61% (129/210). The vast majority (80%) were Clinical Nurse Specialists (CNS). The questionnaire data support the strong belief in attempts to identify unmet needs with over three-quarters feeling strongly about themselves being personally involved in attempting to identify unmet needs. Most of the responders used counselling and communication methods to elicit unmet concerns rather than specific tools such as questionnaires. The vast majority clearly felt that identifying unmet needs in clinic improves patients' perception of outcome post-treatment. Support services' readily' available at the time of consultation were as follows: H&N CNS (99%), Speech and Language (86%), Oncologist (84%), Dietician/Nutritionist (84%), Dentist (44%), Oral Rehabilitation consultant (27%), Dental Hygienist (26%), Physiotherapist (21%), Chaplain (20%), Emotional Support therapist (15%), Psychologist (15%), Occupational therapist (13%), Social worker (8%), other (11%). Although responders felt it very important to identify unmet needs in follow-up clinics, there is reliance on one to one discussion with the patient and carer. Hence in a busy clinic, needs might be easily missed and further research is required into ways to facilitate their identification. | |||||
BibTeX:
@article{Rogers2011,
author = {Rogers, S N and Clifford, N and Lowe, D},
title = {Patient and carer unmet needs: a survey of the British association of head and neck oncology nurses.},
journal = {The British journal of oral & maxillofacial surgery},
year = {2011},
volume = {49},
pages = {343--348},
doi = {https://doi.org/10.1016/j.bjoms.2010.06.017}
}
|
|||||
| Posner, M.R. | Paradigm shift in the treatment of head and neck cancer: the role of neoadjuvant chemotherapy. | 2005 | The oncologist Vol. 10 Suppl 3, pp. 11-19 |
article | DOI |
| Abstract: Chemotherapy is an integral component of the management of patients with locally advanced head and neck cancer, though the optimal use of chemotherapy remains to be defined. The combination of a platinum agent and 5-fluorouracil has been used as the standard neoadjuvant treatment and has been shown to permit organ preservation in operable patients and improve long-term survival outcomes in operable and inoperable patients. Recently, the addition of a taxane, docetaxel or paclitaxel, to standard platinum plus 5-fluorouracil induction chemotherapy has been shown to further improve response rates and survival outcomes. Phase III data are emerging to support combinations of docetaxel or paclitaxel with a platinum plus 5-fluorouracil as a new, more effective and less toxic standard for neoadjuvant chemotherapy. Sequential treatment regimens, incorporating a combination of induction chemotherapy and chemoradiation, are also under study in efforts to further improve long-term survival outcomes. Induction regimens incorporating docetaxel or paclitaxel with a platinum plus 5-fluorouracil are under evaluation in this setting. Randomized trials comparing a sequential treatment approach with standard therapies are also being undertaken and will likely define a new treatment paradigm for patients with locally advanced head and neck cancer. | |||||
BibTeX:
@article{Posner2005,
author = {Posner, Marshall R},
title = {Paradigm shift in the treatment of head and neck cancer: the role of neoadjuvant chemotherapy.},
journal = {The oncologist},
year = {2005},
volume = {10 Suppl 3},
pages = {11--19},
doi = {https://doi.org/10.1634/theoncologist.10-90003-11}
}
|
|||||
| van Linden van den Heuvell, C., van Zuuren, F., Wells, M., van der Laan, G. and Reintsema, H. | Paradigm shift in head and neck oncology patient management. | 2017 | Journal of otolaryngology - head & neck surgery = Le Journal d'oto-rhino-laryngologie et de chirurgie cervico-faciale Vol. 46, pp. 57 |
article | DOI |
| Abstract: This article describes a paradigm shift in what is considered to be good care for patients living with and after (head and neck) cancer. HNO patients often experience severe and difficult physical and psychosocial problems due to the nature and location of the disease. Many disciplines are involved in their treatment, so their voice is only one amongst many others in the decision making process. For this patient group it seems complicated to put the concept of Shared Decision Making into practice. As a step in this direction, patient reported outcomes which ask patients to select the disconcerting issues and symptoms can be used as a basis for referral, supportive care and treatment decision making. We need to provide more tailored and personalized information that is specific to individual circumstances, preferences and concerns and focuses more on the impact of treatment and access to help and support. Follow up of these patients should be concentrated on both medical and emotional aspects. A shift in the way caregivers provide their information contributes to a more profound involvement of patients in treatment decisions. | |||||
BibTeX:
@article{LindenvandenHeuvell2017,
author = {van Linden van den Heuvell, Chiquit and van Zuuren, Florence and Wells, Mary and van der Laan, Geert and Reintsema, Harry},
title = {Paradigm shift in head and neck oncology patient management.},
journal = {Journal of otolaryngology - head & neck surgery = Le Journal d'oto-rhino-laryngologie et de chirurgie cervico-faciale},
year = {2017},
volume = {46},
pages = {57},
doi = {https://doi.org/10.1186/s40463-017-0229-8}
}
|
|||||
| Kanatas, A., Bala, N., Lowe, D. and Rogers, S.N. | Outpatient follow-up appointments for patients having curative treatment for cancer of the head and neck: are the current arrangements in need of change? | 2014 | The British journal of oral & maxillofacial surgery Vol. 52, pp. 681-687 |
article | DOI |
| Abstract: Although there are recommendations, there is little evidence about the rationale for the frequency and duration of review appointments for patients with cancer of the head and neck. We have recorded the pattern of follow-up in a tertiary cancer centre and its association with survival and recurrent disease. We used clinical letters and a prospectively maintained database to obtain details on 297 patients who were treated curatively for squamous cell carcinoma (SCC) of the oral cavity between 2005 and 2008. Mean (SD) age was 63 (12) years and 58% (n = 171) were male. Most patients were seen about 6 times in year one, 3 times in year 2, twice in year 3, twice in year 4, once or twice in year 5, and once yearly beyond year 5. Fewer clinics were scheduled for and attended by patients over 75 years of age, those with overall clinical grades 0-1, and those treated by operation alone in contrast to those who also had adjuvant radiotherapy. Patients were usually seen about 15 times over the 5 years. Taking into account the stage of the tumour and overall mortality, the number and timing of follow-up visits is adequate for the needs of patients with stage II-IV disease. Those with stage I disease may be considered for discharge after the third year if they are told about the risk factors, and signs and symptoms of recurrent disease, and surveillance in primary care. | |||||
BibTeX:
@article{Kanatas2014a,
author = {Kanatas, A and Bala, N and Lowe, D and Rogers, S N},
title = {Outpatient follow-up appointments for patients having curative treatment for cancer of the head and neck: are the current arrangements in need of change?},
journal = {The British journal of oral & maxillofacial surgery},
year = {2014},
volume = {52},
pages = {681--687},
doi = {https://doi.org/10.1016/j.bjoms.2014.06.017}
}
|
|||||
| Kanatas, A., Ghazali, N., Lowe, D., Udberg, M., Heseltine, J., O'Mahony, E. and Rogers, S.N. | Issues patients would like to discuss at their review consultation: variation by early and late stage oral, oropharyngeal and laryngeal subsites. | 2013 | European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery Vol. 270, pp. 1067-1074 |
article | DOI |
| Abstract: The patient concerns inventory (PCI) was developed to help patients raise issues/concerns during routine follow-up and to indicate team members they want to see. This paper reports the use of the PCI across various H&N Cancer sub-sites (oral, oropharyngeal and laryngeal) and stages of disease (early and late) and describes the main concerns that patients want to discuss using a cross-sectional survey comprising the PCI with the University of Washington Quality of Life questionnaire. Patients treated for primary H&N squamous cell carcinoma, 1998-2009, were identified from the University Hospital Aintree H&N Cancer database. 447/775 (58 %) patients responded. Fear of recurrence concerns was common to all clinical groups (range 32-67 %). Speech issues were more common with laryngeal tumours, and saliva issues with oropharyngeal tumours (32 % early, 48 % late). Apart from early-stage laryngeal tumours, patients consistently reported issues concerning dental health/teeth and chewing. The median (IQR) number of concerns overall was 4 (2-7), with significant variation (p < 0.001) between clinical groups ranging from 2 (1-6) for early-stage oral to 6 (2-10) for late-stage oropharyngeal and 7 (5-9) late-stage laryngeal. The results indicated that PCI can be readily incorporated into managing HNC patients and supports a holistic multidisciplinary approach to clinic consultations. It accommodates difficult issues such as fear of recurrence and intimacy. Completion of the PCI by patients before consultation can highlight problems and concerns that doctors can target for discussion, thereby streamlining consultations, and ensuring that patient needs are better met, thus creating a more effective service. | |||||
BibTeX:
@article{Kanatas2013,
author = {Kanatas, A and Ghazali, N and Lowe, D and Udberg, M and Heseltine, J and O'Mahony, E and Rogers, S N},
title = {Issues patients would like to discuss at their review consultation: variation by early and late stage oral, oropharyngeal and laryngeal subsites.},
journal = {European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery},
year = {2013},
volume = {270},
pages = {1067--1074},
doi = {https://doi.org/10.1007/s00405-012-2092-6}
}
|
|||||
| Kanatas, A., Lowe, D., Velikova, G., Roe, B., Horgan, K., Shaw, R.J. and Rogers, S.N. | Issues patients would like to discuss at their review consultation in breast cancer clinics--a cross-sectional survey. | 2014 | Tumori Vol. 100, pp. 568-579 |
article | DOI |
| Abstract: In breast cancer (BC) there are different therapies available with different side effects affecting the health-related quality of life (HRQOL) of patients. Here we report a novel tool, the BC-specific Patient Concerns Inventory (PCI). This work includes a survey that is part of the validation process to allow a larger cohort and comparisons with clinical characteristics. We report the concerns that BC patients would like to discuss in the outpatient clinic - using the PCI - and also their choice of multidisciplinary team members they would like to see. We carried out a cross-sectional survey - using the BC-specific PCI, the EORTC QLQ-C30 and the EORTC BC QLQ-BR23 - of patients who had completed their initial treatment and were attending a review outpatient clinic. 249 patients were recruited from February to July 2012. Survey responses were obtained from 80% (200/249). The three most frequent items were fear of cancer coming back (62%, 124), breast sensitivity/pain (46%, 92), and fatigue/tiredness and low energy levels overall (46%, 92). The most frequently selected members of the multidisciplinary team that patients wished to see were the breast care nurse (46%, 92), the medical oncologist (28%, 55) and the psychologist (20%, 40). The PCI provides the opportunity for multiprofessional engagement across a range of issues specific to BC. It can identify issues relating to physical, psychological, sexual and social functioning, as well as issues relating to body image and lifestyle. | |||||
BibTeX:
@article{Kanatas2014,
author = {Kanatas, Anastasios and Lowe, Derek and Velikova, Galina and Roe, Brenda and Horgan, Kieran and Shaw, Richard J and Rogers, Simon N},
title = {Issues patients would like to discuss at their review consultation in breast cancer clinics--a cross-sectional survey.},
journal = {Tumori},
year = {2014},
volume = {100},
pages = {568--579},
doi = {https://doi.org/10.1700/1660.18184}
}
|
|||||
| Rogers, S.N., Ahiaku, S. and Lowe, D. | Is routine holistic assessment with a prompt list feasible during consultations after treatment for oral cancer? | 2017 | The British journal of oral & maxillofacial surgery | article | DOI |
| Abstract: The head and neck cancer Patient Concerns Inventory (PCI-HN) is a holistic, self-reported list of items that can help patients to disclose their needs and concerns during routine follow-up consultations. The aim of this study was to report how often it was used during the first three years of follow up after treatment for oral cancer, and the range of issues that were raised. The sample comprised consecutive patients treated over a three-year period with curative intent. All clinic attendances were reviewed until October 2015 or until patients had a recurrence, a subsequent primary, metastases, or were discharged home or to follow up at a peripheral hospital, or started palliative care. We identified 92 patients and data were available for 88 of them. The median (IQR) age at the time of treatment was 65 (57-76) years, and 48 (55%) were men. Reviews alternated between the surgeon and oncologist, and typically there were 4.4 surgical reviews in year one, 2.8 in year two, and 1.6 in year three. The inventory was completed 157 times; at least once by 71% (55/77) during year one, 57% (29/51) during year two, and 37% (13/35) during year three. Of those who completed none, nearly half (7/17) died within 12 months, and another six were over 80 years of age. In conclusion, the diversity of concerns raised by patients highlights the need for holistic assessment during follow up, and integration of the inventory into routine consultations will mean that we can repeat it. | |||||
BibTeX:
@article{Rogers2017a,
author = {Rogers, S N and Ahiaku, S and Lowe, D},
title = {Is routine holistic assessment with a prompt list feasible during consultations after treatment for oral cancer?},
journal = {The British journal of oral & maxillofacial surgery},
year = {2017},
doi = {https://doi.org/10.1016/j.bjoms.2017.09.013}
}
|
|||||
| Rogers, S.N., Cleator, A.J., Lowe, D. and Ghazali, N. | Identifying pain-related concerns in routine follow-up clinics following oral and oropharyngeal cancer. | 2012 | World journal of clinical oncology Vol. 3, pp. 116-125 |
article | DOI |
| Abstract: To describe clinical characteristics of head and neck cancer (HNC) patients with pain and those wishing to discuss pain concerns during consultation. Cross-sectional, questionnaire study using University of Washington Quality of Life, version 4 (UW-QOL) and the Patients Concerns Inventory (PCI) in disease-free, post-treatment HNC cohort. Significant pain on UW-QOL and indicating "Pain in head and neck" and "Pain elsewhere" on PCI. One hundred and seventy-seven patients completed UW-QOL and PCI. The prevalence of self-reported pain issues was 38% (67/177) comprising 25% (44/177) with significant problems despite medications and 13% (23/177) with lesser or no problems but wishing to discuss pain. Patients aged under 65 years and patients having treatment involving radiotherapy were more likely to have pain issues. Just over half, 55% (24/44) of patients with significant pain did not express a need to discuss this. Those with significant pain or others wanting to discuss pain in clinic had greater problems in physical and social-emotional functioning, reported suboptimal QOL, and also had more additional PCI items to discuss in clinic compared to those without significant pain and not wishing to discuss pain. Significant HNC-related pain is prevalent in the disease-free, posttreatment cohort. Onward referral to a specialist pain team may be beneficial. The UW-QOL and PCI package is a valuable tool that may routinely screen for significant pain in outpatient clinics. | |||||
BibTeX:
@article{Rogers2012,
author = {Rogers, Simon N and Cleator, Alexander J and Lowe, Derek and Ghazali, Naseem},
title = {Identifying pain-related concerns in routine follow-up clinics following oral and oropharyngeal cancer.},
journal = {World journal of clinical oncology},
year = {2012},
volume = {3},
pages = {116--125},
doi = {https://doi.org/10.5306/wjco.v3.i8.116}
}
|
|||||
| Flexen, J., Ghazali, N., Lowe, D. and Rogers, S.N. | Identifying appearance-related concerns in routine follow-up clinics following treatment for oral and oropharyngeal cancer. | 2012 | The British journal of oral & maxillofacial surgery Vol. 50, pp. 314-320 |
article | DOI |
| Abstract: Facial disfigurement can be a consequence of treatment for oral or oropharyngeal cancer. Patients' concerns about appearance and the impact this has on quality of life are very important, but are often not recognised in a busy outpatient clinic. We aimed to assess concerns about appearance using the University of Washington Quality of Life questionnaire version 4 (UW-QoL) and the Patient Concerns Inventory (PCI), a self-administered questionnaire that allows patients to choose what they would like to discuss in their consultation. Prospective data were collected from 204 patients who attended routine follow-up clinics from August 2007 to mid-July 2009. Fifty-seven percent were male, 68% had cancer of the oral cavity, 78% had clinical T1-T2 tumours, 19% had node positive tumours, 44% had had radiotherapy since diagnosis, and 48% had had free-flap reconstructive surgery. They all completed the questionnaires using touch-screen computer technology at 454 clinic appointments. Appearance was raised on the inventory at 9% (42/454) of clinics, and at 10% (47/454) it was indicated as a serious problem on the UW-QoL questionnaire. Concerns about appearance were raised on the inventory or were shown to be a serious problem on the UW-QoL in 14% (64/454) of patients. The main factors associated with those who reported concerns about appearance were age (younger patients), sex (female), T stage (III and IV), and site (oropharynx). Patients who choose concerns about appearance for discussion on the UW-QoL questionnaire and not on the PCI risk being missed if only the PCI is completed. Both tools compliment the screening of patients who have problems with facial disfigurement; failure to identify them can have serious clinical and psychosocial implications. | |||||
BibTeX:
@article{Flexen2012,
author = {Flexen, J and Ghazali, N and Lowe, D and Rogers, S N},
title = {Identifying appearance-related concerns in routine follow-up clinics following treatment for oral and oropharyngeal cancer.},
journal = {The British journal of oral & maxillofacial surgery},
year = {2012},
volume = {50},
pages = {314--320},
doi = {https://doi.org/10.1016/j.bjoms.2011.05.005}
}
|
|||||
| Vartanian, J.G., Rogers, S.N. and Kowalski, L.P. | How to evaluate and assess quality of life issues in head and neck cancer patients. | 2017 | Current opinion in oncology | article | DOI |
| Abstract: Review quality of life (QOL) concepts and most common instruments to be used in patients with head and neck cancer, as well as the potential benefits and limitations of information derived from QOL studies. Information from QOL studies can be clinical predictors of prognosis, serve as potential screening and planning tools for clinical care and rehabilitation efforts. Enhancements in computer technology and the advent of tools like head and neck cancer-specific item prompt list will allow for QOL data to be used more easily. Patients with malignant head and neck neoplasms can present changes in important vital functions related to the disease and its treatment, usually resulting in a negative impact on their QOL. The application of specific questionnaires can be used to measure such impact and the information derived from QOL studies has the potential to be incorporated in the clinical practice to improve the quality of care. | |||||
BibTeX:
@article{Vartanian2017,
author = {Vartanian, Jose G and Rogers, Simon N and Kowalski, Luiz P},
title = {How to evaluate and assess quality of life issues in head and neck cancer patients.},
journal = {Current opinion in oncology},
year = {2017},
doi = {https://doi.org/10.1097/CCO.0000000000000369}
}
|
|||||
| Kanatas, A., Humphris, G., Lowe, D. and Rogers, S.N. | Further analysis of the emotional consequences of head and neck cancer as reflected by the Patients' Concerns Inventory. | 2015 | The British journal of oral & maxillofacial surgery Vol. 53, pp. 711-718 |
article | DOI |
| Abstract: Patients with cancer of the head and neck can experience high levels of distress. The emotional burden of the disease must be recognised and important negative emotions assessed so that appropriate interventions can be provided. We obtained data from 1482 head and neck cancer Patients' Concerns Inventories (HNC-PCI) completed by 813 patients between 1 August 2007 and 9 January 2013, and particularly concentrated on the psychological, emotional, and spiritual well-being domain, which comprises 14 items. We also assessed health-related quality of life (HRQoL) using the University of Washington quality of life questionnaire version 4 (UWQoL). A total of 538 patients were male and the mean age of all patients on first completing the PCI was 64 years (range 20-94). Primary tumours were oral (n=392, 48%), oropharyngeal (n=196, 24%), laryngeal (n=142, 17%), other (n=74, 9%), or unknown (n=9, 1%). Fifty-one percent of patients (n=753) chose no items in the emotions category, 16% (n=236) identified fear of recurrence only, 16% (n=236) selected items other than fear of recurrence, and 17% (n=257) selected fear of recurrence and others. Patients who identified fear of recurrence with other issues had significantly worse scores for anxiety, mood, and overall quality of life (QoL). Fear of recurrence is common but patients with multiple emotional concerns need additional support, and further research is required to specify the practical details of the interventions needed at various points during and after treatment. | |||||
BibTeX:
@article{Kanatas2015,
author = {Kanatas, A and Humphris, G and Lowe, D and Rogers, S N},
title = {Further analysis of the emotional consequences of head and neck cancer as reflected by the Patients' Concerns Inventory.},
journal = {The British journal of oral & maxillofacial surgery},
year = {2015},
volume = {53},
pages = {711--718},
doi = {https://doi.org/10.1016/j.bjoms.2015.02.026}
}
|
|||||
| Rogers, S.N. and Humphris, G.M. | Fear of recurrence: It's time for us to do more for patients | 2013 | Oncology News Vol. 8(5), pp. 164-167 |
article | |
| Abstract: How often do we talk about the fear of the cancer coming back to patients and their carers? The evidence is that we don't raise the issue of fear of recurrence often enough during follow-up and this leads to potentially avoidable anxiety and distress. Fear of recurrence is a very sensitive area but clinicians and the wider professional support network can do more to help patients. |
|||||
BibTeX:
@article{,
author = {Rogers, S N and Humphris, G M},
title = {Fear of recurrence: It's time for us to do more for patients},
journal = {Oncology News},
year = {2013},
volume = {8},
number = {5},
pages = {164-167}
}
|
|||||
| Ghazali, N., Cadwallader, E., Lowe, D., Humphris, G., Ozakinci, G. and Rogers, S.N. | Fear of recurrence among head and neck cancer survivors: longitudinal trends. | 2013 | Psycho-oncology Vol. 22, pp. 807-813 |
article | DOI |
| Abstract: Fear of recurrence (FoR) following head and neck cancer (HNC) treatment is a major patient concern but is infrequently discussed in outpatient settings and may cause significant detrimental effect on patient psychological well-being. The aim of this paper is to determine longitudinal trends and predictors of significant FoR. Prospective data collection was obtained in 189 post-treatment HNC patients with 456 clinic attendances from October 2008 to January 2011. All patients completed Patient Concerns Inventory (PCI), University of Washington Quality of Life Questionnaire version 4 and the FoR questionnaires using a combination of paper and touch-screen technology. The prevalence of significant FoR was 35%, which was stable longitudinally. Logistic regression-delineated predictors of significant FoR were young age (<65 years), anxiety/mood and patient-reported FoR. Conventional prognostic factors including standard clinicopathological factors, treatment modality and length of follow-up did not predict significant FoR. Over time, 20% of patients reported significant FoR intermittently, whereas 30% experienced it consistently. The remaining 50% did not experience significant FoR. Patient-related characteristics were more important than clinicopathological prognostic factors in predicting significant FoR, potentially creating a mismatch between the doctors' perception of patient's experience of FoR with what patients may experience. In the long term, FoR is expressed across a spectrum extending from 'normal' FoR to persistent significant FoR with an intermediate category of intermittent significant FoR. Those patients experiencing intermittent and consistent levels of significant FoR may benefit from psychological support. This study confirmed that self-reported screening FoR using the PCI is a valuable tool in identifying significant FoR. | |||||
BibTeX:
@article{Ghazali2013a,
author = {Ghazali, Naseem and Cadwallader, Ella and Lowe, Derek and Humphris, Gerry and Ozakinci, Gozde and Rogers, Simon N},
title = {Fear of recurrence among head and neck cancer survivors: longitudinal trends.},
journal = {Psycho-oncology},
year = {2013},
volume = {22},
pages = {807--813},
doi = {https://doi.org/10.1002/pon.3069}
}
|
|||||
| Ozakinci, G., Swash, B., Humphris, G., Rogers, S.N. and Hulbert-Williams, N.J. | Fear of cancer recurrence in oral and oropharyngeal cancer patients: An investigation of the clinical encounter. | 2017 | European journal of cancer care | article | DOI |
| Abstract: Fear of cancer recurrence (FCR) is common among individuals treated for cancer. Explorations of how this fear is expressed within an oncology setting and responded to are currently lacking. The aim was to investigate how head and neck cancer survivors in follow-up consultations express FCR, investigate how a healthcare professional addresses recurrence fears, and examine how survivors experience this interaction. We recorded the follow-up consultations of those participants who have reported FCR as a concern on the Patient Concerns Inventory. We also conducted a follow-up phone interview with the participants. We analysed the transcripts using thematic analysis. Five men and six women were recruited, aged 55-87 (mean age = 64). Follow-up consultation analyses revealed that the consultant used "normalising FCR," "reassurance," and "offer of referral to a counsellor." Interviews revealed themes around how they coped with FCR, relevance of personal history on FCR, and the impact of feeling gratitude towards the consultant on expression of FCR. Analyses indicate that patients may feel reluctant to raise their FCR with their clinician for fear of appearing "ungrateful" or of damaging a relationship that is held in high esteem. Findings indicate the initiation of FCR with patients can be beneficial for patient support. | |||||
BibTeX:
@article{Ozakinci2017,
author = {Ozakinci, G and Swash, B and Humphris, G and Rogers, S N and Hulbert-Williams, N J},
title = {Fear of cancer recurrence in oral and oropharyngeal cancer patients: An investigation of the clinical encounter.},
journal = {European journal of cancer care},
year = {2017},
doi = {https://doi.org/10.1111/ecc.12785}
}
|
|||||
| Garavand, A., Mohseni, M., Asadi, H., Etemadi, M., Moradi-Joo, M. and Moosavi, A. | Factors influencing the adoption of health information technologies: a systematic review. | 2016 | Electronic physician Vol. 8, pp. 2713-2718 |
article | DOI |
| Abstract: The successful implementation of health information technologies requires investigating the factors affecting the acceptance and use of them. The aim of this study was to determine the most important factors affecting the adoption of health information technologies by doing a systematic review on the factors affecting the acceptance of health information technology. This systematic review was conducted by searching the major databases, such as Google Scholar, Emerald, Science Direct, Web of Science, Pubmed, and Scopus. We used various keywords, such as adoption, use, acceptance of IT in medicine, hospitals, and IT theories in health services, and we also searched on the basis of several important technologies, such as Electronic Health Records (HER), Electronic Patient Records (EPR), Electronic Medical Records (EMR), Computerized Physician Order Entry (CPOE), Hospital Information System (HIS), Picture Archiving and Communication System (PACS), and others in the 2004-2014 period. The technology acceptance model (TAM) is the most important model used to identify the factors influencing the adoption of information technologies in the health system; also, the unified theory of acceptance and use of technology (UTAUT) model has had a lot of applications in recent years in the health system. Ease of use, usefulness, social impact, facilitating conditions, attitudes and behavior of users are effective in the adoption of health information technologies. By considering various factors, including ease of use, usefulness, and social impact, the rate of the adoption of health information technology can be increased. | |||||
BibTeX:
@article{Garavand2016,
author = {Garavand, Ali and Mohseni, Mohammah and Asadi, Heshmatollah and Etemadi, Manal and Moradi-Joo, Mohammad and Moosavi, Ahmad},
title = {Factors influencing the adoption of health information technologies: a systematic review.},
journal = {Electronic physician},
year = {2016},
volume = {8},
pages = {2713--2718},
doi = {https://doi.org/10.19082/2713}
}
|
|||||
| Ghazali, N., Lowe, D. and Rogers, S.N. | Enhanced patient reported outcome measurement suitable for head and neck cancer follow-up clinics. | 2012 | Head & neck oncology Vol. 4, pp. 32 |
article | DOI |
| Abstract: The 'Worse-Stable-Better' (W-S-B) question was introduced to capture patient-perceived change in University of Washington Quality of Life (UW-QOL) domains. 202 head and neck cancer patients in remission prospectively completed UW-QOL and Patients Concerns Inventory (PCI). For each UW-QOL domain, patients indicated whether over the last month things had worsened (W), remained stable (S) or were better (B). 202 patients at 448 attendances selected 1752 PCI items they wanted to discuss in consultation, and 58% (1024/1752) of these were not covered by the UW-QOL. UW-QOL algorithms highlighted another 440 significant problems that the patient did not want to discuss (i.e. the corresponding items on the PCI were not selected).After making allowance for UW-QOL algorithms to identify 'significant problems' and PCI selection of corresponding issues for discussion there remained clear residual and notable variation in W-S-B responses, in particular to identify patients with significant problems that were getting worse, and patients without significant problems that wanted to discuss issues that were getting worse. Changes in mean UW-QOL scores were notably lower for those getting worse on the W-S-B question, typically by 10 or more units a magnitude that suggests clinically important changes in score. The W-S-B question adds little questionnaire burden and could help to better identify patients who might benefit from intervention. The results of this study suggest that the UW-QOL with the W-S-B modification should be used together with the PCI to allow optimal identification of issues for patient-clinician discussion during routine outpatient clinics. | |||||
BibTeX:
@article{Ghazali2012,
author = {Ghazali, Naseem and Lowe, Derek and Rogers, Simon N},
title = {Enhanced patient reported outcome measurement suitable for head and neck cancer follow-up clinics.},
journal = {Head & neck oncology},
year = {2012},
volume = {4},
pages = {32},
doi = {https://doi.org/10.1186/1758-3284-4-32}
}
|
|||||
| Rogers, S.N., Audisio, R.A. and Lowe, D. | Do the elderly raise different issues when using the Patient Concerns Inventory in routine head and neck cancer follow-up clinics? | 2015 | European journal of cancer care Vol. 24, pp. 189-197 |
article | DOI |
| Abstract: Head and Neck (H&N) cancer treatment can have a major detrimental impact on patient lives, and these issues can go unrecognised and be inadequately addressed. The aim of this paper is to compare the Patient Concerns Inventory (PCI) responses across age groups attending routine H&N cancer follow-up clinics with particular focus on the elderly (75 years or older). The PCI-HN data were obtained from patients attending follow-up clinics between August 2007 and January 2013. The groups for comparison were: <55 (n = 105), 55-64 (n = 170), 65-69 (n = 64), 70-74 (n = 68), and ≥75 (n = 76), the median in this last group of 79.1 years. Regarding quality of life (QoL) on first completing the PCI the elderly reported better anxiety and mood, higher social-emotional subscale scores and better overall QoL. On the PCI, being elderly did not seem to affect the total numbers of items selected, though fewer items were selected from the psychological, emotional and spiritual well-being domain, and in particular the item about fear of recurrence. Dentist and surgeon were the two health professionals most often selected that patients wished to see or be referred on to. It is possible to recognise concerns in routine clinical care, thus allowing the opportunity for intervention and support to improve the outcome for the elderly. | |||||
BibTeX:
@article{Rogers2015,
author = {Rogers, S N and Audisio, R A and Lowe, D},
title = {Do the elderly raise different issues when using the Patient Concerns Inventory in routine head and neck cancer follow-up clinics?},
journal = {European journal of cancer care},
year = {2015},
volume = {24},
pages = {189--197},
doi = {https://doi.org/10.1111/ecc.12289}
}
|
|||||
| Ahmed, A.E., Lowe, D., Kirton, J.A., O'Brien, M.R., Mediana, A., Frankland, H., Bruce, H., Kennedy, T., Rogers, S.N. and Moots, R.J. | Development of a Rheumatology-specific Patient Concerns Inventory and Its Use in the Rheumatology Outpatient Clinic Setting. | 2016 | The Journal of Rheumatology Vol. 43, pp. 779-787 |
article | DOI |
| Abstract: Successful management of rheumatic conditions involves increasing complexity of care. Delivering this in a holistic way is a growing challenge. The aim of our study was to develop a Patient Concerns Inventory (PCI) and assess it in the rheumatology clinic setting. This observational exploratory study occurred with 2 phases. In phase I, the PCI was developed after a systematic literature search, expert opinion, and 3 patient focus group discussions. In phase II, the PCI was piloted in a general rheumatology clinic. Fifty-four patients were assessed in the pre-PCI group and 51 in the post-PCI group. Median (IQR) duration of consultation was 8 min (5-14) without PCI and 15 min (10-20) with PCI. The pre-PCI group raised 335 concerns from 50 patients, median (IQR) of 5 (3-10) per patient, rising post-PCI to 521 concerns, median (IQR) of 9 (5-16) from 51 patients, p = 0.002. Additional concerns predominantly arose from "physical and functional well-being" and "social care and well-being" domains. Most patients rated their experience with their doctor in the consultation as excellent or outstanding across all 11 questions in the questionnaire, both before and after the introduction of the PCI to the clinic setting. The PCI is a useful holistic needs assessment tool for rheumatology clinics. Although its use may initially prolong the consultation slightly, patients can raise a significantly higher number of concerns, which does not occur at the expense of patient satisfaction. This may help in identifying areas of unmet needs that previously went unnoticed. | |||||
BibTeX:
@article{Ahmed2016,
author = {Ahmed, Ashar E and Lowe, Derek and Kirton, Jennifer A and O'Brien, Mary R and Mediana, Ayren and Frankland, Helen and Bruce, Hannah and Kennedy, Tom and Rogers, Simon N and Moots, Robert J},
title = {Development of a Rheumatology-specific Patient Concerns Inventory and Its Use in the Rheumatology Outpatient Clinic Setting.},
journal = {The Journal of Rheumatology},
year = {2016},
volume = {43},
pages = {779--787},
doi = {https://doi.org/10.3899/jrheum.150068}
}
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| Rooney, A.G., Netten, A., McNamara, S., Erridge, S., Peoples, S., Whittle, I., Hacking, B. and Grant, R. | Assessment of a brain-tumour-specific Patient Concerns Inventory in the neuro-oncology clinic. | 2014 | Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer Vol. 22, pp. 1059-1069 |
article | DOI |
| Abstract: Brain tumour patients may struggle to express their concerns in the outpatient clinic, creating a physician-focused rather than a shared agenda. We created a simple, practical brain-tumour-specific holistic needs assessment (HNA) tool for use in the neuro-oncology outpatient clinic. We posted the brain tumour Patient Concerns Inventory (PCI) to a consecutive sample of adult brain tumour attendees to a neuro-oncology outpatient clinic. Participants brought the completed PCI to their clinic consultation. Patients and staff provided feedback. Seventy seven patients were eligible and 53 participated (response rate = 68%). The PCI captured many problems absent from general cancer checklists. The five most frequent concerns were fatigue, fear of tumour coming back, memory, concentration, and low mood. Respondents used the PCI to formulate 105 specific questions, usually about the meaning of physical or psychological symptoms. Patients and staff found the PCI to be useful, and satisfaction with the instrument was high. This study demonstrates the clinical utility of the brain tumour PCI in a neuro-oncology clinic. The combination of a brain-tumour-specific concerns checklist and an intervention to focus patient agenda creates a simple and efficient HNA tool. | |||||
BibTeX:
@article{Rooney2014,
author = {Rooney, Alasdair G and Netten, Anouk and McNamara, Shanne and Erridge, Sara and Peoples, Sharon and Whittle, Ian and Hacking, Belinda and Grant, Robin},
title = {Assessment of a brain-tumour-specific Patient Concerns Inventory in the neuro-oncology clinic.},
journal = {Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer},
year = {2014},
volume = {22},
pages = {1059--1069},
doi = {https://doi.org/10.1007/s00520-013-2058-2}
}
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| Rogers, S.N. and Lowe, D. | An evaluation of the Head and Neck Cancer Patient Concerns Inventory across the Merseyside and Cheshire Network. | 2014 | The British journal of oral & maxillofacial surgery Vol. 52, pp. 615-623 |
article | DOI |
| Abstract: The Patient Concerns Inventory (PCI-H&N) is a carefully designed 57-item checklist specifically for use in routine follow-up clinics for patients with head and neck cancer. Although developmental work at one hospital has been very positive, its use had not been evaluated across a wider network. The aim of this project was to evaluate use of the inventory across the Merseyside and Cheshire cancer network. Patients from 5 hospitals were included and 66 patients, 8 doctors, and 6 nurse specialists took part. Almost all patients found the inventory easy or very easy to complete and it caused no notable problems with the running of appointments. Two-thirds felt that all or most of the items mentioned were talked about in the consultations and no patient felt that the consultation had been made worse. Two-thirds felt that it had helped them communicate with the doctor, while some felt that communication was already excellent and beyond improvement. Only a small minority (12%) thought that it could or definitely would lead to disappointment because needs might not be met. Most patients definitely wanted to continue using the inventory and only 5% definitely did not. Most of the doctors and specialist nurses saw its potential benefit in clinical practice. However, some practical, administrative, and educational aspects need to be addressed before it can be used more widely. It is likely that the inventory will be incorporated into practice at each clinic and locality in different ways. | |||||
BibTeX:
@article{Rogers2014,
author = {Rogers, Simon N and Lowe, Derek},
title = {An evaluation of the Head and Neck Cancer Patient Concerns Inventory across the Merseyside and Cheshire Network.},
journal = {The British journal of oral & maxillofacial surgery},
year = {2014},
volume = {52},
pages = {615--623},
doi = {https://doi.org/10.1016/j.bjoms.2014.04.011}
}
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| Leong, S.C. and Lesser, T.H. | A United Kingdom survey of concerns, needs, and priorities reported by patients diagnosed with acoustic neuroma. | 2015 | Otology & neurotology : official publication of the American Otological Society, American Neurotology Society [and] European Academy of Otology and Neurotology Vol. 36, pp. 486-490 |
article | DOI |
| Abstract: The Patient Concerns Inventory-Acoustic Neuroma (PCI-AN) was developed to explore specifically the concerns that patients would like to discuss during their clinic consultation. The PCI covers a range of issues including hearing, intimacy, fatigue, financial/benefits, relationships, regret, and support for family. It also lists multidisciplinary team (MDT) members that patients would like to see or be referred on to. The PCI-AN was emailed to members of the British Acoustic Neuroma Association. A total of 465 complete (54.5%) responses were received. There were 284 female and 181 male subjects. Overall, the most common treatment modality was surgical excision (47%). A quarter of the study cohort had stereotactic radiosurgery, whereas 23% were conservatively managed with interval MRI scanning. The remaining 5% had both surgery and stereotactic radiosurgery. From the 55-item PCI-AN, the most commonly selected issues that patients wanted to talk about were related to the physical and functional well-being and treatment received. Tinnitus was the most frequently selected issue (46%), followed by fatigue/tiredness (43%), dizziness (33%), further investigation (39%), acoustic neuroma treatment (38%), and energy levels (32%). More than a quarter of the respondents had fears of their acoustic neuroma recurring (29%), had concerns about their facial appearance/ palsy (29%), or suffered pain in the head and neck region (26%). The 3 health-care professionals patients most wanted to talk with either in clinic or by referral were as follows: ENT/neurosurgeon (39%), vestibular (balance) physiotherapist (39%), and audiologist (39%). Although it was unknown how many respondents had facial palsy, 21% wanted to see a facial palsy physiotherapist, and another 10% sought referral to a plastic surgeon. The PCI-AN has shed light on an interesting array of issues, which may be overlooked by clinicians in busy skull base clinic. The PCI-AN allows for patient-directed consultation and ultimately empowers them to be actively involved in the management of their health. | |||||
BibTeX:
@article{Leong2015,
author = {Leong, Samuel C and Lesser, Tristram H},
title = {A United Kingdom survey of concerns, needs, and priorities reported by patients diagnosed with acoustic neuroma.},
journal = {Otology & neurotology : official publication of the American Otological Society, American Neurotology Society [and] European Academy of Otology and Neurotology},
year = {2015},
volume = {36},
pages = {486--490},
doi = {https://doi.org/10.1097/MAO.0000000000000556}
}
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| Rogers, S.N., Cross, B., Talwar, C., Lowe, D. and Humphris, G. | A single-item screening question for fear of recurrence in head and neck cancer. | 2016 | European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery Vol. 273, pp. 1235-1242 |
article | DOI |
| Abstract: Fear of recurrence (FoR) is the most frequent concern patients wish to discuss in head and neck review clinics. The aim of the study was to design a simple screening question on fear of recurrence to be incorporated into the University of Washington Quality of Life Questionnaire (UW-QOLv4), for use in clinical practice. A cross-sectional survey comprising 528 patients was conducted. 11 % selected the two most severe FoR categories. FoR responses correlated strongly (Spearman r s = -0.82) with the mean score of the seven items of the Fear of Recurrence Questionnaire. There was also a strong association with anxiety and mood dysfunction as measured from the UW-QOL, and with overall QOL. Patients more affected by FoR tended to be younger and post-radiotherapy or chemotherapy. The FoR screening question may be a useful addition to the UW-QOLv4 to help identify patients with significant FoR to receive extra support. | |||||
BibTeX:
@article{Rogers2016,
author = {Rogers, Simon N and Cross, Ben and Talwar, Cyrus and Lowe, Derek and Humphris, Gerry},
title = {A single-item screening question for fear of recurrence in head and neck cancer.},
journal = {European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery},
year = {2016},
volume = {273},
pages = {1235--1242},
doi = {https://doi.org/10.1007/s00405-015-3585-x}
}
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| Miller, N. and Rogers, S.N. | A review of question prompt lists used in the oncology setting with comparison to the Patient Concerns Inventory. | 2016 | European journal of cancer care | article | DOI |
| Abstract: A question prompt list (QPL) is a simple and inexpensive communication tool used to facilitate patient participation in medical consultations. The QPL is composed of a structured list of questions and has been shown to be an effective way of helping ensure patients' individual information needs are appropriately met. This intervention has been investigated in a variety of settings but not specifically head and neck cancer (HNC). The aim of this paper was to perform a narrative review of literature reporting the use of a QPL for oncology patients and to draw comparison to the Patient Concerns Inventory (PCI-HN). The databases Scopus, PubMed and MEDLINE were searched using the key terms 'question prompt list', 'question prompt sheet', 'cancer' and 'oncology'. Of 98 articles hand searched, 30 of which were found to meet all inclusion criteria, and described in a tabulated summary. The studies concluded that the QPL was an effective intervention, enabling active patient participation in medical consultations. The PCI-HN is specific for HNC and differs from many QPLs, which are more general cancer tools. The QPL approach should prove to be a useful intervention for HNC sufferers, however further research into the clinical utility is required. | |||||
BibTeX:
@article{Miller2016,
author = {Miller, N and Rogers, S N},
title = {A review of question prompt lists used in the oncology setting with comparison to the Patient Concerns Inventory.},
journal = {European journal of cancer care},
year = {2016},
doi = {https://doi.org/10.1111/ecc.12489}
}
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