nach oben

Supportive Care in Cancer

Erschienen in:

26.03.2020 | Original Article

“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

verfasst von: Merran Findlay, Nicole M. Rankin, Judith Bauer, Gemma Collett, Tim Shaw, Kathryn White

Erschienen in: Supportive Care in Cancer | Ausgabe 12/2020

Einloggen, um Zugang zu erhalten

Abstract

Background

Malnutrition 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.

Aim

This 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.

Method

Qualitative 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.

Results

Eleven 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.

Conclusions

This 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.

Findlay M, Bauer, J, Brown, T, Head and Neck Guideline Steering Committee (2011) Evidence-based practice guidelines for the nutritional management of adult patients with head and neck cancer. Sydney: Cancer Council Australia. http://wiki.cancer.org.au/australia/COSA:Head_and_neck_cancer_nutrition_guidelines. Accessed 2019 Jun 4

National Institute for Clinical Excellence (2004) Guidance on cancer services: improving outcomes in head and neck cancers: - the research evidence. London

National Institute for Clinical Excellence (2004) Guidance on cancer services: improving outcomes in head and neck cancers - the manual. London

French SD, Green S, O’Connor DA, McKenzie JE, Francis JJ, Michie S, Buchbinder R, Schattner P, Spike N, Grimshaw JM (2012) Developing theory-informed behaviour change interventions to implement evidence into practice: a systematic approach using the Theoretical Domains Framework. Implement Sci 7:38. https://doi.org/10.1186/1748-5908-7-38CrossRefPubMedPubMedCentral

Michie S, van Stralen M, West R (2011) The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implement Sci 6:42. https://doi.org/10.1186/1748-5908-6-42CrossRefPubMedPubMedCentral

Damschroder LJ, Aron DC, Keith RE, Kirsh SR, Alexander JA, Lowery JC (2009) Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implement Sci 4(1):50. https://doi.org/10.1186/1748-5908-4-50CrossRefPubMedPubMedCentral

Proctor E, Silmere H, Raghavan R, Hovmand P, Aarons G, Bunger A, Griffey R, Hensley M (2011) Outcomes for implementation research: conceptual distinctions, measurement challenges, and research agenda. Admin Pol Ment Health 38(2):65–76. https://doi.org/10.1007/s10488-010-0319-7CrossRef

Michie S, Johnston M, Abraham C, Lawton R, Parker D, Walker A (2005) Making psychological theory useful for implementing evidence based practice: a consensus approach. Qual Saf Health Care 14(1):26–33CrossRefPubMedPubMedCentral

Grol R, Grimshaw J (2003) From best evidence to best practice: effective implementation of change in patients’ care. Lancet 362(9391):1225–1230. https://doi.org/10.1016/s0140-6736(03)14546-1CrossRefPubMed

10.

Davis DA, Taylor-Vaisey A (1997) Translating guidelines into practice. A systematic review of theoretic concepts, practical experience and research evidence in the adoption of clinical practice guidelines. CMAJ 157(4):408–416PubMedPubMedCentral

11.

Francke AL, Smit MC, de Veer AJ, Mistiaen P (2008) Factors influencing the implementation of clinical guidelines for health care professionals: a systematic meta-review. BMC Med Inform Decis 8:38. https://doi.org/10.1186/1472-6947-8-38CrossRef

12.

Alberda C, Alvadj-Korenic T, Mayan M, Gramlich L (2017) Nutrition care in patients with head and neck or esophageal cancer: the patient perspective. Nutr Clin Pract:884533617725050. https://doi.org/10.1177/0884533617725050

13.

Mayre-Chilton KM, Talwar BP, Goff LM (2011) Different experiences and perspectives between head and neck cancer patients and their care-givers on their daily impact of a gastrostomy tube. J Hum Nutr Diet 24(5):449–459. https://doi.org/10.1111/j.1365-277X.2011.01165.xCrossRefPubMed

14.

Larsson M (2007) Needing a hand to hold - lived experiences during the trajectory of care for patients with head and neck cancer treated with radiotherapy. Cancer Nurs 30(4):324–334CrossRefPubMed

15.

Merrick S, Farrell D (2012) Head and neck cancer patients' experiences of percutaneous endoscopic gastrostomy feeding: a Q-methodology study. Eur J Cancer Care (Engl) 21(4):493–504. https://doi.org/10.1111/j.1365-2354.2012.01326.xCrossRef

16.

Osborne JB, Collin LA, Posluns EC, Stokes EJ, Vandenbussche KA (2012) The experience of head and neck cancer patients with a percutaneous endoscopic gastrostomy tube at a Canadian cancer center. Nutr Clin Pract 27(5):661–668. https://doi.org/10.1177/0884533612457181CrossRefPubMed

17.

Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101. https://doi.org/10.1191/1478088706qp063oaCrossRef

18.

Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health C 19(6):349–357. https://doi.org/10.1093/intqhc/mzm042CrossRef

19.

Langius JA, Bakker S, Rietveld DH, Kruizenga HM, Langendijk JA, Weijs PJ, Leemans CR (2013) Critical weight loss is a major prognostic indicator for disease-specific survival in patients with head and neck cancer receiving radiotherapy. Br J Cancer 109(5):1093–1099. https://doi.org/10.1038/bjc.2013.458CrossRefPubMedPubMedCentral

20.

Vangelov B, Venchiarutti RL, Smee RI (2017) Critical weight loss in patients with oropharynx cancer during radiotherapy (± chemotherapy). Nutr Cancer 69(8):1211–1218. https://doi.org/10.1080/01635581.2017.1367943CrossRefPubMed

21.

Hakel-Smith N, Lewis NM (2004) A standardized nutrition care process and language are essential components of a conceptual model to guide and document nutrition care and patient outcomes. J Am Diet Assoc 104(12):1878–1884CrossRefPubMed

22.

Lacey K, Pritchett E (2003) Nutrition care process and model: ADA adopts road map to quality care and outcomes management. J Am Diet Assoc 103(8):1061–1072CrossRefPubMed

23.

Thompson KL, Elliott L, Fuchs-Tarlovsky V, Levin RM, Voss AC, Piemonte T (2017) Oncology evidence-based nutrition practice guideline for adults. JAND 117(2):297–310 e247. https://doi.org/10.1016/j.jand.2016.05.010CrossRef

24.

Charuhas Macris P, Schilling K, Palko R (2018) Academy of nutrition and dietetics: revised 2017 standards of practice and standards of professional performance for registered dietitian nutritionists (competent, proficient, and expert) in oncology nutrition. JAND 118(4):736–748 e742. https://doi.org/10.1016/j.jand.2018.01.012CrossRef

25.

Talwar B, Findlay M (2012) When is the optimal time for placing a gastrostomy in patients undergoing treatment for head and neck cancer? Curr Opin Support Palliat Care 6(1):41–53. https://doi.org/10.1097/SPC.0b013e32834feafdCrossRefPubMed

26.

Clare LB, Elizabeth CW, Anne JH, Karen M, Lynell B, Lizbeth MK, Phillip G (2012) A pilot trial of a speech pathology telehealth service for head and neck cancer patients. J Telemed Telecare 18(8):443–446. https://doi.org/10.1258/jtt.2012.gth104CrossRef

27.

Pfeifer MP, Keeney C, Bumpous J, Schapmire TJ, Studts JL, Myers J, Head B (2015) Impact of a telehealth intervention on quality of life and symptom distress in patients with head and neck cancer. J Commun Support Oncol 13(1):14–21. https://doi.org/10.12788/jcso.0101CrossRef

28.

Burns CL, Ward EC, Hill AJ, Kularatna S, Byrnes J, Kenny LM (2017) Randomized controlled trial of a multisite speech pathology telepractice service providing swallowing and communication intervention to patients with head and neck cancer: evaluation of service outcomes. Head Neck 39(5):932–939. https://doi.org/10.1002/hed.24706CrossRefPubMed

29.

Jabbour J, Dhillon HM, Shepherd HL, Sundaresan P, Milross C, Clark JR (2017) Challenges in producing tailored internet patient education materials. Int J Radiat Oncol Biol Phys 97(4):866–867. https://doi.org/10.1016/j.ijrobp.2016.11.023CrossRefPubMed

30.

Edelstein P (2017) Navigating healthcare reform - E-book: an insider’s guide for nurses and allied health professionals, 1st edn. Elselvier

Titel: “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
verfasst von: Merran Findlay
Nicole M. Rankin
Judith Bauer
Gemma Collett
Tim Shaw
Kathryn White
Publikationsdatum: 26.03.2020
Verlag: Springer Berlin Heidelberg
Erschienen in: Supportive Care in Cancer / Ausgabe 12/2020
Print ISSN: 0941-4355
Elektronische ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-020-05386-0

Neu im Fachgebiet Onkologie

25.04.2024 | Nierenkarzinom | Nachrichten

Springer Medizin

“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

Abstract

Background

Aim

Method

Results

Conclusions

Neu im Fachgebiet Onkologie

Adjuvante Immuntherapie verlängert Leben bei RCC

Alectinib verbessert krankheitsfreies Überleben bei ALK-positivem NSCLC

Bei Senioren mit Prostatakarzinom auf Anämie achten!

ICI-Therapie in der Schwangerschaft wird gut toleriert

Update Onkologie

Springer Medizin

Abstract

Background

Aim

Method

Results

Conclusions

Bitte loggen Sie sich ein, um Zugang zu diesem Inhalt zu erhalten

Weitere Artikel der Ausgabe 12/2020

Response to the letter to the Editor concerning manuscript entitled, “Randomized open-label phase II trial of 5-day aprepitant plus ondansetron compared to ondansetron alone in the prevention of chemotherapy-induced nausea-vomiting (CINV) in glioma patients receiving adjuvant temozolomide”

Patient-reported symptom burden and supportive care needs at cancer diagnosis: a retrospective cohort study

Fertility navigators in female oncofertility care in an academic medical center: a qualitative evaluation

A randomized phase II trial evaluating two non-pharmacologic interventions in cancer survivors for the treatment of sleep-wake disturbances: NCCTG N07C4 (Alliance)

Photobiomodulation in oral mucositis in patients with head and neck cancer: a systematic review and meta-analysis followed by a cost-effectiveness analysis

The role of exercise in the management of adverse effects of androgen deprivation therapy for prostate cancer: a rapid review

Neu im Fachgebiet Onkologie

Adjuvante Immuntherapie verlängert Leben bei RCC

Alectinib verbessert krankheitsfreies Überleben bei ALK-positivem NSCLC

Bei Senioren mit Prostatakarzinom auf Anämie achten!

ICI-Therapie in der Schwangerschaft wird gut toleriert

Update Onkologie