Quality of life, coping strategies, and supportive care needs in head and neck cancer survivors: a qualitative study

Crowder, Sylvia L.; Najam, Natasha; Sarma, K.V.S.; Fiese, Barbara H.; Arthur, Anna E.

doi:10.1007/s00520-020-05981-1

Cited by 24 publications

(24 citation statements)

References 30 publications

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“…Key findings indicated this online resource should map across three key landmarks in the cancer journey; namely, before surgery, during treatment and post-treatment. Patients had a desire for the online resource to provide an awareness of different treatment modalities available for oral cancer (35), sequelae related to their particular HNC sub-type (36,37), treatment-related consequences from a patient experience perspective (38) and anticipated long-term recovery process (39). Patients and professionals in this study highlighted that end-users understanding of the treatment trajectory should be optimised through tailoring and layering of information, to avoid patients being overwhelmed with inappropriate information and potentially misguiding decision-making (40).…”

Section: Discussionmentioning

confidence: 99%

Informing the development of an online resource for patients with oral cancer: triangulation of qualitative data from patients and healthcare professionals

Semple¹,

Kelly²,

Thompson³

et al. 2023

Front Oral Maxillofac Med

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Background: The traditional, paternalistic, paradigm of healthcare delivery is no longer acceptable; with transformation placing greater emphasis on shared-care and decision-making, centred on patients' values, needs and preferences. In this process, patients with cancer often assume a more active role in healthcare.The internet has acted as a likely catalyst and, or facilitator in this process, with proliferation during the global pandemic. Consequently, there has been an expansion of health information being accessed online by patients. A recent scoping review indicated a lack of high-quality evidence-based online resources for head and neck patients, with a paucity of end-user involvement during development. To inform the development and co-design of a high-quality, acceptable online resource for oral cancer patients, aimed at facilitating shared decision-making and treatment preparedness, patients' and healthcare professionals' (HCPs) preferences have been elucidated in this study.Methods: Qualitative research design using semi-structured interviews was employed with patients (n=10) and three focus groups with HCPs (n=21) to understand their perceptions and preference on content, issues to be addressed and key design elements of an online resource to promote decision-making and coping with oral cancer and its treatment effects. Reflexive thematic analysis (TA) was used to analyse both data sets, which were then triangulated.

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Section: Discussionmentioning

confidence: 99%

Informing the development of an online resource for patients with oral cancer: triangulation of qualitative data from patients and healthcare professionals

Semple¹,

Kelly²,

Thompson³

et al. 2023

Front Oral Maxillofac Med

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“…HNC patients find it difficult to imagine life after treatment and value opportunities to learn how others coped when confronted with a similar situation [7]. Patient-centred information and patient experience narratives could greatly augment the information patients' receives before and after treatment, potentially improving coping and adaptation, as well as promoting satisfaction with the delivery of care [14]. Patient experience narratives are recognised as central to UK health policy and have an important role in supporting shared decision-making and improving health [15].…”

Section: Introductionmentioning

confidence: 99%

Availability and use of web-based interventions for patients with head and neck cancer: a scoping review

Kelly¹,

Gordon²,

Thompson³

et al. 2022

J Cancer Surviv

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Purpose To identify and review the nature, scope and use of web-based interventions for patients with head and neck cancer (HNC). Method A scoping review guided by the methodological framework described by the Joanna Briggs Institute was performed to review empirical studies and websites. Seven electronic databases (CINAHL, Medline, Scopus, Embase, Cochrane, PubMed and PsycInfo) were searched from 2010 to 2020, data extracted and synthesised using thematic analysis. The Google search engine was employed, identifying the first 100 websites, using the search term head and neck cancer. Websites meeting eligibility criteria were assessed using the QUEST analysis tool, and descriptively summarised. Results Thirteen empirical studies and 32 websites were included. As identified by empirical studies, web-based interventions were developed to provide (1) patient information on HNC and related treatments, (2) advice and support during treatment and (3) management strategies promoting adjustment to life with and beyond HNC. The reviewed websites provided minimal information to aid shared decision-making and facilitate preparedness for treatment, with few utilising patient narratives. Web-based interventions for HNC patients were mainly text based and focused on survivorship. Conclusions There is a paucity of theory-based, co-designed web-based interventions using patient narratives. Implications for Cancer Survivors As patients increasingly look to the internet for advice and support, healthcare professionals are in a position to provide high-quality web-based interventions. There is an opportunity to rigorously develop a web-based intervention, containing narratives of peoples’ lives before and after HNC treatment, aiding decision-making, preparedness for treatment and self-management.

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“…The treatment for head and neck cancer (HNC) can have a detrimental effect on appearance, speech and swallowing, emotional well-being and social integration [ 1 ]. The HNC follow-up clinic is an important opportunity for checking for cancer but also provides an opportunity for clinicians to assess the outcome of treatment and for patients to address issues of concern [ 2 ].…”

Section: Introductionmentioning

confidence: 99%

The Patient Concerns Inventory in head and neck oncology: a structured review of its development, validation and clinical implications

Kanatas

Lowe²,

Rogers

2022

Eur Arch Otorhinolaryngol

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Introduction The Patient Concerns Inventory (PCI) is a condition specific prompt list that was initially developed for head and neck cancer (HNC) and is referred to as the PCI–HN. There have been numerous publications regarding the PCI–HN, since it was first published in 2009. To date, there has not been a review of its development, validation and clinical implications. A collation of relevant papers into key sections allows multidisciplinary teams and researchers to have an overview of the PCI–HN’s background, evaluation and utility. This is essential if colleagues are to have confidence in the tool and be able to reflect on how to optimise its use in clinical practice. Methods Five search engines were used: EMBASE, Medline, PubMed, CINAHL and Handle-on-QOL for the specific term ‘Patient Concerns Inventory’ up to and including 1st February 2022. In addition, an accumulation of PCI–HN data of 507 HNC patients was drawn from previous studies in Liverpool and Leeds between 2007 and 2020 and was analysed specifically for this paper. Results 54 papers relating to the PCI–HN were identified. The review is structured into eight sections: (1) What is the PCI–HN and how does it work; (2) Feasibility and acceptability; (3) Psychometrics; (4) Items selected and frequency (5) Associations with Health-Related Quality of Life (HRQOL) and casemix; (6) Other observational studies; (7) Randomised trial evaluation; (8) General discussion and further research. Conclusions As the term PCI is quite ubiquitous and produces many hits when searching the literature, this review provides a very concise and convenient historical context for the PCI–HN and collates the current literature.

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Quality of life, coping strategies, and supportive care needs in head and neck cancer survivors: a qualitative study

Cited by 24 publications

References 30 publications

Informing the development of an online resource for patients with oral cancer: triangulation of qualitative data from patients and healthcare professionals

Informing the development of an online resource for patients with oral cancer: triangulation of qualitative data from patients and healthcare professionals

Availability and use of web-based interventions for patients with head and neck cancer: a scoping review

The Patient Concerns Inventory in head and neck oncology: a structured review of its development, validation and clinical implications

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