Variations in concerns reported on the patient concerns inventory in patients with head and neck cancer from different health settings across the world

Rogers, Simon N.; Alvear, Alvaro; Anesi, Alexandre; Babin, E.; Balık, Ali; Batstone, Martin; Brockmeyer, Phillipp; Carrasco, Claudia Celedon; Chien, Chih‐Yen; Chirilă, Magdalena; Dholam, Kanchan; Doss, Jennifer Geraldine; Finizia, Caterina; Ghani, Wan Maria Nabillah; Gurav, Sandeep; Kadir, Kathreena; Kolator, Mateusz; Lima, Roberto A.; Lin, Yuan-Chih; Nhongo, Simon; Karataş, Mevlüt; Peker, Kadriye; Pesic, Zoran; Ransy, Pierre; Santos, Izabella Costa; Schliephake, Henning; Shah, Kinnari; Souza, Fernanda Gonzalez Rocha; Sunil, Geethu; Thankappan, Krishnakumar; Ehrsson, Ylva Tiblom; Ţiple, Cristina; Tuomi, Lisa; Valerini, Sara; Lara, Pablo Vásquez; Zatoński, Tomasz; Lowe, Derek

doi:10.1002/hed.26027

Cited by 27 publications

(39 citation statements)

References 17 publications

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“…Patients’ concerns were mostly regarding their physical status, treatment-related issues and emotional domains, specifically on ‘fear of cancer coming back’, ‘dental health’, ‘chewing’, ‘dry mouth’, ‘sore mouth’, ‘swallowing’, ‘cancer treatment’, ‘diet restriction’, ‘shoulder’, ‘speech/voice’ or ‘fear of adverse events’. These concerns concurred with other studies [ 8 , 53 , 54 ]. Although differences in the ranking order of concerns were noted in comparison with recent findings by Rogers et al [ 53 ], dental health and oral functions constituted the six most frequent patient concerns, very much related to the early phase of post-treatment.…”

Section: Discussionsupporting

confidence: 93%

“…The median number of three concerns selected by patients in the present study was lower than the latest PCI variation study by Rogers et al [53], which reported with a median (IQR) of 5 (2-10) concerns (range of 0 to 48 items) [53]. In addition, a lower proportion of patients in the present study selected six or more concerns compared to nearly half in the latter study [53].…”

Section: Discussioncontrasting

confidence: 80%

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Can post-treatment oral cancer patients’ concerns reflect their cancer characteristics, HRQoL, psychological distress level and satisfaction with consultation?

Aminnudin¹,

Doss²,

Ismail³

et al. 2020

ecancer

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Background: Oral cancer and its treatment impact patients' post-treatment outcomes, challenging clinicians to manage them optimally. Addressing patients' concerns is central to holistic patient-centred care. Objectives: This study aimed to determine post-treatment oral cancer patients' concerns and its relationship with patients' clinical characteristics, health-related quality of life (HRQoL), psychological distress and patient satisfaction with the follow-up consultation. Methods: A total of 85 oral cancer patients were recruited from a three-armed pragmatic RCT study on the patient concerns inventory for head and neck cancer (PCI-H&N), which was conducted at six hospital-based oral maxillofacial specialist clinics throughout Malaysia. Malaysians aged 18 years and above and on follow-ups from 1 month to 5 years or more were eligible. Patients completed the PCI-H&N, functional assessment of cancer therapy-H&N v4.0 and Distress Thermometer at pre-consultation and satisfaction questionnaire at post-consultation. The data were analysed descriptively; multiple linear regression and multivariate logistic regression analyses were used to determine possible predictors of patients' HRQoL and psychological distress. Results: 'Recurrence or fear of cancer coming back' (31.8%) was most frequently selected. 43.5% of patients selected >4 concerns. A significantly high number of concerns were associated with patients of '1-month to 1-year post-treatment' (n = 84%; p = 0.001). A significant association existed between 'time after treatment completed' and patients' concerns of 'chewing/eating', 'mouth opening', 'swelling', 'weight', 'ability to perform', 'cancer treatment' and 'supplement/diet-related'. 'Chewing/eating' was predicted for low Research

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Section: Discussionsupporting

confidence: 93%

Section: Discussioncontrasting

confidence: 80%

Can post-treatment oral cancer patients’ concerns reflect their cancer characteristics, HRQoL, psychological distress level and satisfaction with consultation?

Aminnudin¹,

Doss²,

Ismail³

et al. 2020

ecancer

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“…Although extensively used globally, its focus of use has been with curative head and neck cancer patients, but it has potential to be adapted. 71 Further research into which ‘screening’ tool or method would be most appropriate for initiating palliative care referral for head and neck cancer patients seems pertinent. Furthermore, clarity about how best to incorporate specific staging indicators for those recognised to be ‘high risk’ 72 in additional to individual patient needs would seem beneficial.…”

Section: Discussionmentioning

confidence: 99%

The palliative care needs and experiences of people with advanced head and neck cancer: A scoping review

Mayland

Doughty

et al. 2020

Palliat Med

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Background: The palliative care needs of people with advanced head and neck cancer pose unique complexities due to the impact the illness has on eating, speaking, appearance and breathing. Examining these needs would help provide guidance about developing relevant models of care and identify gaps in research knowledge. Aim: To identify and map out the palliative care needs and experiences for people with advanced head and neck cancer. Design: A scoping literature review following the methods described by the Joanna Briggs Institute. Data sources: An electronic search of the literature was undertaken in MEDLINE (Ovid), EMBASE and CINAHL covering the years January 1996 to January 2019. Results: People with advanced head and neck cancer often had palliative care needs but there was variability in the timing and access to relevant services. A high prevalence of interventions, for example hospital admissions were needed even during the last month of life. This was not necessarily negated with early engagement of palliative care. Dissonance between patients and family carers about information needs and decision-making was an additional complexity. Studies tended to be descriptive in nature, and often involved a single centre. Conclusion: This scoping review demonstrates the complexity of care for people with advanced head and neck cancer and the issues related to the current healthcare systems. Focus on appropriate referral criteria, increased integration and coordination of care and robust evaluation of specific care components seems key. Linkage between research and service design delivery across teams, disciplines and care settings seems pertinent.

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“…The fields of application of telemedicine are multiple: in the first management of maxillofacial traumas, in teleradiology, in follow-up visits and numerous others [8][9][10][11][12][13]. Another useful application might be the administration of a survey before the visit, in order to better focus the attention on the points considered critical by the patient during the visit [14,15]. There is considerable room for improvement and action should be taken in this direction.…”

Section: Discussionmentioning

confidence: 99%

Emerging challenges and possible strategies in maxillo-facial and oral surgery during the COVID-19 pandemic

et al. 2020

Self Cite

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The Coronavirus disease 2019 (COVID-19) pandemic suddenly took the world by storm and Italy was one of the hardest hit countries. Maxillo-facial surgery and dentistry procedures had to be significantly reorganized, since they are considered high-risk procedures. Protocols had to be changed and interdepartmental cooperation was put in place to plan surgical interventions and maintain high standards. Various improvements have been made to prevent and reduce the risks of spreading the infection. Even if the situation seems to have improved, being unprepared is not an option. In this paper the experience gained during these months has been shared and possible future challenges has been highlighted, suggesting practical adjustments based also on new guidelines and recommendations.

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Variations in concerns reported on the patient concerns inventory in patients with head and neck cancer from different health settings across the world

Cited by 27 publications

References 17 publications

Can post-treatment oral cancer patients’ concerns reflect their cancer characteristics, HRQoL, psychological distress level and satisfaction with consultation?

Can post-treatment oral cancer patients’ concerns reflect their cancer characteristics, HRQoL, psychological distress level and satisfaction with consultation?

The palliative care needs and experiences of people with advanced head and neck cancer: A scoping review

Emerging challenges and possible strategies in maxillo-facial and oral surgery during the COVID-19 pandemic

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