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Recommendations for a Patient Concerns Inventory specific to patients with head and neck cancer receiving palliative treatment

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Abstract

Purpose

Patient Concerns Inventory (PCI) prompt lists are designed to capture health needs and concerns that matter most to patients. A head and neck cancer (HNC)-specific PCI was initially developed for follow-up after treatment with curative intent (PCI-HNC follow-up). Patients with HNC receiving palliative treatment (PT) may have different symptoms and concerns to discuss with the healthcare professionals. The aim of this study is to establish recommendations for a PCI-HNC-PT prompt list.

Methods

The process leading to the recommendations for the PCI-HNC-PT was a four-step sequential qualitative study. First, semi-structured interviews among patients with HNC receiving treatment with palliative intent were conducted based on the original PCI-HNC follow-up prompt list. Second, a multidisciplinary reviewing panel revised the PCI-HNC follow-up based on the findings from the patient’s interviews. Third, a focus group interview (FGI) with specialized oncology nurses was conducted based on the revised PCI-HNC follow-up. Fourth, the results of the patient and FGI interviews were combined and re-assessed by the multidisciplinary reviewing panel leading to a consensus on the selection and recommendation of items for the final PCI-HNC-PT. The think aloud method was used in patient and FGI interviews to establish face and content validity.

Results

Ten patients receiving palliative systemic treatment for HNC were included and interviewed. Face validity and content validity for the PCI list were demonstrated. Patients independently expressed that their concerns and needs fluctuate and change over time and welcomed the possibility of being supported by a PCI prompt list. The patients estimated a PCI prompt list to be relevant or very relevant. No items were found to be unacceptable or inappropriate but were revised to be more precise in their description. Additional items were suggested from the need to be actively involved in their treatment and care. The FGI led to the knowledge that the nurses did not have a systematic approach to communicate on symptoms. The nurses highlighted that the PCI prompt list is likely helpful for addressing symptoms, needs, and concerns that the nurses themselves would not immediately inquire about. The multidisciplinary reviewing panel came to a consensus on items and concerns recommended for the PCI-HNC-PT.

Conclusion

The idea of a PCI prompt list was welcomed by patients with HNC receiving palliative treatment. The original PCI-HNC follow-up was adapted and has led to the recommendations of items and concerns for a PCI-HNC-PT prompt list. The next phase will be to feasibility test the PCI-HNC-PT in the clinical setting. The PCI prompt list has the potential to help facilitate the concerns and needs of the patients during the palliative treatment trajectory and thereby have the potential to strengthen a person-centered approach.

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Abbreviations

EGFR:

Epidermal growth factor receptor

FGI:

Focus group interview

HNC:

Head and neck cancer

PT:

Palliative treatment

PCI:

Patient Concerns Inventory

PRO:

Patient reported outcome

QoL:

Quality of life

RT:

Radiotherapy

References

  1. Wiering B, de Boer D, Delnoij D (2017) Patient involvement in the development of patient-reported outcome measures: a scoping review. Health Expect 20(1):11–23

    Article  Google Scholar 

  2. Miller N, Rogers SN (2018) A review of question prompt lists used in the oncology setting with comparison to the patient concerns inventory. Eur J Cancer Care (Engl) 27(1). https://doi.org/10.1111/ecc.12489

  3. Kanatas A, Lowe D, Velikova G, Roe B, Horgan K, Shaw RJ et al (2014) Issues patients would like to discuss at their review consultation in breast cancer clinics–a cross-sectional survey. Tumori 100(5):568–579

    Article  Google Scholar 

  4. Ahmed AE, Lowe D, Kirton JA, O’Brien MR, Mediana A, Frankland H et al (2016) Development of a rheumatology-specific patient concerns inventory and its use in the rheumatology outpatient clinic setting. J Rheumatol 43(4):779–787

    Article  Google Scholar 

  5. Gibson JAG, Spencer S, Rogers SN, Shokrollahi K (2018) Formulating a Patient Concerns Inventory specific to adult burns patients: learning from the PCI concept in other specialties. Scars Burn Heal 4:2059513118763382

    Google Scholar 

  6. Gibson JAG, Yarrow J, Brown L, Evans J, Rogers SN, Spencer S et al (2019) Identifying patient concerns during consultations in tertiary burns services: development of the Adult Burns Patient Concerns Inventory. BMJ Open 9(12):e032785

    Article  Google Scholar 

  7. Rogers SN, El-Sheikha J, Lowe D (2009) The development of a Patients Concerns Inventory (PCI) to help reveal patients concerns in the head and neck clinic. Oral Oncol 45(7):555–561

    Article  CAS  Google Scholar 

  8. Rogers SN, Allmark C, Bekiroglu F, Edwards RT, Fabbroni G, Flavel R et al (2020) Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: baseline results in a cluster preference randomised controlled trial. Eur Arch Otorhinolaryngol 277(12):3435–47 (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)

    Article  Google Scholar 

  9. Rogers SN, Lowe D, Lowies C, Yeo ST, Allmark C, McAvery D et al (2018) Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: a cluster preference randomized controlled trial. BMC Cancer 18(1):444

    Article  Google Scholar 

  10. Ghazali N, Roe B, Lowe D, Rogers SN (2013) Uncovering patients’ concerns in routine head and neck oncology follow up clinics: an exploratory study. Br J Oral Maxillofac Surg 51(4):294–300

    Article  CAS  Google Scholar 

  11. Allen S, Harris R, Brown SL, Humphris G, Zhou Y, Rogers SN (2018) High levels of socioeconomic deprivation do not inhibit patients’ communication of concerns in head and neck cancer review clinics. Br J Oral Maxillofac Surg 56(6):536–539

    Article  CAS  Google Scholar 

  12. Laursen M, Specht L, Kristensen CA, Gothelf A, Bernsdorf M, Vogelius I et al (2018) An extended hypofractionated palliative radiotherapy regimen for head and neck carcinomas. Front Oncol 8:206

    Article  Google Scholar 

  13. Lau A, Yang WF, Li KY, Su YX (2020) Systemic therapy in recurrent or metastatic head and neck squamous cell carcinoma- a systematic review and meta-analysis. Crit Rev Oncol Hematol 153:102984

    Article  Google Scholar 

  14. Holländer-Mieritz C, Johansen J, Johansen C, Vogelius IR, Kristensen CA, Pappot H (2019) Comparing the patients’ subjective experiences of acute side effects during radiotherapy for head and neck cancer with four different patient-reported outcomes questionnaires. Acta Oncol 58(5):603–609. https://doi.org/10.1080/0284186X.2018.1563713

  15. Mayland CR, Doughty HC, Rogers SN, Gola A, Mason S, Hubbert C, et al (2020) A qualitative study exploring patient, family carer and healthcare professionals’ direct experiences and barriers to providing and integrating palliative care for advanced head and neck cancer. J Palliat Care 825859720957817

  16. Schuit AS, Holtmaat K, Hooghiemstra N, Jansen F, Lissenberg-Witte BI, Coupe VMH et al (2020) Efficacy and cost-utility of the eHealth self-management application “Oncokompas”, helping partners of patients with incurable cancer to identify their unmet supportive care needs and to take actions to meet their needs: a study protocol of a randomized controlled trial. Trials 21(1):124

    Article  Google Scholar 

  17. Ozakinci G, Swash B, Humphris G, Rogers SN, Hulbert-Williams NJ (2018) Fear of cancer recurrence in oral and oropharyngeal cancer patients: An investigation of the clinical encounter. Eur J Cancer Care (Engl) 27(1). https://doi.org/10.1111/ecc.12785

  18. Wolcott MD, Lobczowski NG (2021) Using cognitive interviews and think-aloud protocols to understand thought processes. Curr Pharm Teach Learn 13(2):181–188

    Article  Google Scholar 

  19. Krueger RA. Focus groups: a practical guide for applied research 5th edition. Sage Publications Inc 2014

  20. Malterud K, Siersma VD, Guassora AD (2016) Sample size in qualitative interview studies: guided by information power. Qual Health Res 26(13):1753–1760

    Article  Google Scholar 

  21. Rogers SN, Ahiaku S, Lowe D (2018) Is routine holistic assessment with a prompt list feasible during consultations after treatment for oral cancer? Br J Oral Maxillofac Surg 56(1):24–28

    Article  CAS  Google Scholar 

  22. Mortensen A (2020) Needs assessment and symptom management in patients surgically treated for head and neck cancer [PhD]: University of Copenhagen, Faculty of Health and Medical Sciences

  23. Mortensen A, Wessel I, Rogers SN, Tolver A, Jarden M (2022) Needs assessment in patients surgically treated for head and neck cancer-a randomized controlled trial. Support Care Cancer : Off J Multinatl Asso Support Care Cancer

  24. Shenton AK (2004) Strategies for ensuring trustworthiness in qualitative research projects. Educ Inf 22(2):63–75

    Google Scholar 

  25. Falchook AD, Green R, Knowles ME, Amdur RJ, Mendenhall W, Hayes DN et al (2016) Comparison of patient- and practitioner-reported toxic effects associated with chemoradiotherapy for head and neck cancer. JAMA Otolaryngol Head Neck Surg 142(6):517–23

    Article  Google Scholar 

  26. Jensen K, Bonde Jensen A, Grau C (2006) The relationship between observer-based toxicity scoring and patient assessed symptom severity after treatment for head and neck cancer A correlative cross sectional study of the DAHANCA toxicity scoring system and the EORTC quality of life questionnaires. Radiot Oncol : J European Society Ther Radiol Oncol 78(3):298–305

    Article  Google Scholar 

  27. Basch E, Deal AM, Kris MG, Scher HI, Hudis CA, Sabbatini P et al (2016) Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol : Off J Am Soc Clin Oncol 34(6):557–565

    Article  CAS  Google Scholar 

  28. Lin C, Kang SY, Donermeyer S, Teknos TN, Wells-Di Gregorio SM (2020) Supportive care needs of patients with head and neck cancer referred to palliative medicine. Otolaryngol Head Neck Surg : Off J Am Acad Otolaryngol-Head Neck Surg 194599820912029

  29. Shunmugasundaram C, Rutherford C, Butow PN, Sundaresan P, Dhillon HM (2019) Content comparison of unmet needs self-report measures used in patients with head and neck cancer: a systematic review. Psychooncol 28(12):2295–2306

    Article  Google Scholar 

  30. Olsen MH, Boje CR, Kjaer TK, Steding-Jessen M, Johansen C, Overgaard J et al (2015) Socioeconomic position and stage at diagnosis of head and neck cancer - a nationwide study from DAHANCA. Acta oncologica (Stockholm, Sweden) 54(5):759–766

    Article  Google Scholar 

  31. Veinot TC, Mitchell H, Ancker JS (2018) Good intentions are not enough: how informatics interventions can worsen inequality. J Am Med Inform Assoc : JAMIA 25(8):1080–1088

    Article  Google Scholar 

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Acknowledgements

The authors would like to thank all the participants in this research and the staff involved in the recruitment of participants.

Funding

This work was supported by The Health Foundation, Grant number 17-B-0257; Danish Comprehensive Cancer Centre Radiotherapy and Danish Cancer Society, Grant number R191-A11526; Faculty of Health and Medical Sciences, University of Copenhagen, Grant number 18–10; The A.P. Moller Foundation, Grant number 19-L-0040; Holm’s Memorial Foundation, Grant number 20006–1824; Varian; Knowledge Center for Telehealth Capital Region of Denmark; and The Oncological Research Fund Rigshospitalet, Denmark.

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Authors and Affiliations

  1. Department of Oncology, Centre for Cancer and Organ Diseases, Rigshospitalet, University of Copenhagen, Blegdamsvej 9, 2100, Copenhagen, Denmark

    Cecilie Holländer-Mieritz, Anne Marie Juhl Elsborg, Claus Andrup Kristensen, Helle Pappot & Karin Piil

  2. Faculty of Health and Medical Sciences, Department of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark

    Cecilie Holländer-Mieritz & Helle Pappot

  3. Evidence-Based Practice Research Centre (EPRC), Faculty of Health and Social Care, Edge Hill University, Liverpool, UK

    Simon N. Rogers

  4. Regional Maxillofacial Unit, University Hospital Aintree, Liverpool, UK

    Simon N. Rogers

  5. Department of Public Health, Aarhus University, Bartholins Allé 2, Aarhus C, 8000, Copenhagen, Denmark

    Karin Piil

Authors
  1. Cecilie Holländer-Mieritz
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  2. Anne Marie Juhl Elsborg
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  3. Claus Andrup Kristensen
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  4. Simon N. Rogers
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  5. Helle Pappot
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  6. Karin Piil
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Contributions

All the authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Anne Marie Juhl Elsborg, Cecilie Holländer-Mieritz, and Karin Piil. Cecilie Holländer-Mieritz wrote the first draft of the manuscript, and all the authors commented on previous versions of the manuscript. All the authors read and approved the final manuscript.

Corresponding author

Correspondence to Cecilie Holländer-Mieritz.

Ethics declarations

Ethical approval

The study, carried out in accordance with the Declaration of Helsinki, follows General Data Protection Regulation (GDPR) and is registered at the Capital Region of Denmark ID P-2020–237.

Consent to participate

Written informed consent was obtained from all study participants.

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N/A

Competing interests

The authors declare no relevant competing interests.

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Holländer-Mieritz, C., Elsborg, A.M.J., Kristensen, C.A. et al. Recommendations for a Patient Concerns Inventory specific to patients with head and neck cancer receiving palliative treatment. Support Care Cancer 31, 54 (2023). https://doi.org/10.1007/s00520-022-07471-y

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