Evidence map›Paper›PMID 32215737›Full record

ArticleSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer2020

"Completely and utterly flummoxed and out of my depth": patient and caregiver experiences during and after treatment for head and neck cancer-a qualitative evaluation of barriers and facilitators to best-practice nutrition care.

Merran Findlay, Nicole M Rankin, Judith Bauer, Gemma Collett, Tim Shaw, Kathryn White

Abstract read
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In one paragraph

Article in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
25citing papers in PubMed, 3 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

25 citing papers in PubMed, 3 syntheses or guidelines pooled it.

  1. Systematic Review of Patient Preferences and Experiences Regarding Dietetic Outpatient Care.Journal of human nutrition and dietetics : the official journal of the British Dietetic Association · 2025
    Pooled it
  2. Pooled it
  3. The changing face of head and neck cancer: are patients with human papillomavirus-positive disease at greater nutritional risk? A systematic review.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2022
    Pooled it
  4. Exploring the determinants of health literacy and its effects on health-related outcomes in family caregivers of patients with cancer.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025
    Trial
  5. A theoretical explanation for how a nutrition counseling and medically tailored meal delivery program benefitted participants living with lung cancer.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024
    Trial
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  7. Review
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  11. Treatment summaries for head and neck cancer survivors: a pilot study to improving patient recall and survivorship care plans.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025
    Article
  12. Poor nutrition status associated with low patient satisfaction six months into treatment for head and neck/esophageal cancer treatment: A prospective multicenter cohort study.Nutrition in clinical practice : official publication of the American Society for Parenteral and Enteral Nutrition · 2025
    Article
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  15. Review
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  17. "My life's not my own": A qualitative study into the expectations of head and neck cancer carers.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2022
    Article
  18. Article
  19. Patient and carer experience of nutrition care throughout and beyond treatment for head and neck cancer: a qualitative longitudinal study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2022
    Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Merran FindlayCancer Services, Royal Prince Alfred Hospital, Sydney, New South Wales, Australia. merran.findlay@health.nsw.gov.au.ORCID https://orcid.org/0000-0001-6964-1533
Nicole M RankinResearch in Implementation Science and eHealth (RISe), Faculty of Health Sciences, University of Sydney, Sydney, New South Wales, Australia.ORCID https://orcid.org/0000-0002-0715-1405
Judith BauerSydney Catalyst Translational Cancer Research Centre, University of Sydney, Sydney, New South Wales, Australia.ORCID https://orcid.org/0000-0002-3830-5147
Gemma CollettCancer Nursing Research Unit, Susan Wakil School of Nursing and Midwifery, Faculty of Medicine and Health, Sydney Nursing School, University of Sydney, Sydney, New South Wales, Australia.
Tim ShawResearch in Implementation Science and eHealth (RISe), Faculty of Health Sciences, University of Sydney, Sydney, New South Wales, Australia.
Kathryn WhiteSydney Catalyst Translational Cancer Research Centre, University of Sydney, Sydney, New South Wales, Australia.ORCID https://orcid.org/0000-0003-4763-1734

Funding

National Health and Medical Research Council, Australia 1092508
6 · The paper itself

Abstract

backgroundMalnutrition is prevalent in patients with head and neck cancer (HNC), impacting on outcomes. Despite publication of best-practice nutrition care clinical guidelines, evidence-practice gaps persist.

aimThis project aimed to understand the perspectives of patients and their caregivers about nutritional care and how their unmet supportive care needs can be better addressed in designing a new model of care (MOC). The results will contribute to documenting the barriers and enablers to implementing best practice nutrition care for patients with HNC.

methodQualitative interviews were conducted with patients who had completed radiotherapy with or without (+/-) other treatment modality (surgery and/or systematic therapy) of curative intent for HNC. Patients were purposively sampled from a major tertiary referral centre in Sydney, Australia. Patients' primary caregivers were also invited to participate if both parties consented. A semi-structured interview schedule was developed to elicit information about barriers and facilitators to change and inform development of the new MOC. Interviews were transcribed verbatim then analysed using an inductive thematic approach. This study was one component of a mixed methods design to explore the barriers and facilitators to best-practice nutrition care in a head and neck oncology unit.

resultsEleven participants (seven patients, four caregivers) took part in the interviews. Four key themes were identified with branching themes within each: (1) being ill-prepared for the impact of treatment, even when advised; (2) navigating complex systems to meet significant care needs; (3) depleted by overwhelming and prolonged suffering; and (4) information lost in translation.

conclusionsThis study highlights the unique and complex care needs of people with HNC and those caring for them. To design and successfully deliver a patient-centred MOC, specific strategies will be required to address: early and ongoing access to expert supportive care clinicians; integrated and coordinated care; individual information, education and support needs and; and education of MDT staff in accurate and consistent messaging, ensuring nutrition care is a collective responsibility. Nutrition care did not appear to be viewed separately to overall care from the patient perspective as the importance of nutrition ultimately became viewed as vital treatment.

Indexed as

AdultAgedCaregiversFemaleHead and Neck NeoplasmsHumansMaleMalnutritionMiddle AgedNutrition TherapyPatient-Centered CarePatientsQualitative ResearchHead and neck neoplasmsNutritional statusNutritional supportOncology

Identifiers

PMID32215737

What OpenQuestion holds

Textmetadata
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.