Head and Neck Cancer Survivorship: Learning the Needs, Meeting the Needs

https://doi.org/10.1016/j.semradonc.2017.08.008Get rights and content

Cancers of the head and neck and the treatments required to control them frequently result in serious and persistent impairments that can affect participation and quality of life. Increased recognition of the needs of cancer survivors and their caregivers has prompted research focused on the unique concerns of this complex group. Unmet needs have been identified among 60–70% of patients and a similar proportion of their partners; impacts can include profound social effects, isolation, and psychiatric conditions. Interprofessional teams, supplementing oncology nursing and physicians with physical rehabilitation, occupational therapy, speech-language pathology, nutrition and psychological disciplines is important to address the spectrum of emotional, cognitive, physical and functional, and pragmatic issues. In addition to investigating modified anti-cancer therapy intended to reduce the frequency of long-term toxicities, supportive care strategies that may be effective include physical activity, nutritional intervention, behavioral and cognitive-behavioral therapy, psycho-education and goal management therapy. This article addresses identified needs across varied domains, the current state of research surrounding them, and their impact on quality of life, while also describing one cancer center’s approach to head and neck cancer survivorship.

Introduction

The 2005 publication, From Cancer Patient to Cancer Survivor: Lost in Transition,1 is frequently regarded as the catalyst to the development of cancer survivorship initiatives. In fact, significant efforts in both research and program development relevant to what we now term “survivorship” pre-date this document. Supportive care research and programs using terms such as quality of life (QOL), psychosocial care, rehabilitation, and pastoral care, among others, have long aimed to meet the holistic needs of cancer patients. However, such programs were frequently insufficiently resourced, fragmented, and/or inaccessible due to cost or geography. Thus, 2005 is a watershed date for increased public discourse regarding the ongoing implications of a cancer diagnosis, for both the individual and those in his or her circle of care. Targeted funding, meetings, and collaborations resulted. Initial efforts focused on common cancers, and in particular breast cancer. However, over time, there has been recognition that needs may differ across cancer diagnoses, related to differences in demographics, the specific disease and treatment-related effects, and differing time courses for active treatment, chronic care, surveillance, and recurrence.

Head and neck cancer (HNC) is a term usually encompassing primarily squamous cell cancers of the mucosal surfaces of the upper aerodigestive tract (paranasal sinuses, nasal cavity, pharynx, oral cavity, and larynx), often grouped together with major and minor salivary gland cancers, and with more variable inclusion of other rare pathologies occurring in the same anatomic locations (eg, adenocarcinomas, sarcomas, and melanomas). These relatively rare cancers together make up about 5% of all cancers, but patients and families affected by these malignancies experience such profound and numerous disabilities that their morbidity far exceeds their incidence.

In this review, we attempt to outline the unmet needs of HNC survivors and address the current knowledge around managing the major physical, emotional, and cognitive disabilities that affect them. We also describe the ongoing evolution of an interdisciplinary, disease-specific survivorship program under development since 2012 for these survivors at a single large cancer center.

Section snippets

Unmet survivorship needs in HNC patients and their caregivers

Unmet survivorship needs are common and have been identified in over 50% of general cancer patients.2 These unmet needs, if they are not addressed, can negatively impact psychological well-being, QOL, and ability to complete daily tasks.3 Recent studies have investigated the specific nature of unmet needs in HNC patients, a group who had been largely excluded from previous work in this area.4

There are several validated measures to assess unmet supportive care or survivorship needs in cancer

HNC-specific physical rehabilitation issues

Cancer rehabilitation involves coordinated, professional care that enables people to maximize physical, social, and psychological function within the limits of the disease and its treatment effects, and engage in personally valued activities within their social contexts.15 Health disciplines involved with delivering rehabilitation may include (but are not limited to) occupational therapists, physiatrists, physical therapists, psychologists, registered dieticians, social workers, and

Swallowing and Speech Impairments

Swallowing and speech impairments are common comorbidities experienced by HNC survivors at various intensities throughout their lifetimes. Within the first year post-RT, approximately half of HNC survivors experience difficulties with swallowing (dysphagia)35, 36 and speech (dysarthria).37 By 1 year post-RT, these impairments persist but are significantly reduced.38, 39 Unfortunately, both dysphagia and dysarthria can worsen years after RT. In fact, of all patients who return for follow-up

Depression and Subjective Well-being Concerns

People affected by HNC must contend with disease and treatment factors, psychosocial stressors, and contextual elements that exacerbate their effects.

Disease and treatment stressors include swallowing and eating problems (eg, dysphagia), edentulism, reliance on feeding tubes, speech problems, disfigurement, pain, and cancer recurrence, many of which are associated with anxiety and depression.49, 50, 51, 52, 53, 54, 55, 56, 57, 58, 59, 60, 61 Some HNC disease variables do not relate

Cancer-related Cognitive Dysfunction

A decline in a person’s neurocognitive abilities from their premorbid levels can adversely alter functioning in work, school, and interpersonal relationships, affecting QOL and psychological well-being.118, 119, 120, 121, 122 HNC patients receive treatments shown to be associated with neurocognitive dysfunction in other cancer populations. Neurocognitive impairment is a well-known side effect in patients treated for brain tumors and metastases as well as noncentral nervous system patients who

QOL for HNC patients

Although the concept of multidimensional QOL instruments designed to holistically measure the overall well-being of patients has been recognized for over 30 years, as exemplified by the European Organisation for Research and Treatment of Cancer instruments (EORTC QLQ-C30/HN35),165 among others, it is only recently that prospective QOL data from randomized trials has become available for HNC patients.166 These data have shown that greater radiation conformality through the use of IMRT can result

The Princess Margaret Cancer Centre HNC Survivorship Programme

The Princess Margaret Cancer Centre is a quaternary care facility located in Toronto, Canada and affiliated with the University Health Network and the University of Toronto. It serves as a regional referral center and a national resource for complex HNC cases; approximately 850 HNC new patients are seen each year, with most receiving ongoing follow-up for 5-10 years. Explicit cancer survivorship efforts at our center began with the establishment of the Electronic Living Laboratory for

Summary and Conclusions

Individuals diagnosed with HNC, as well as their families and caregivers, face a lifetime of challenges. Impairments due to direct effects of the cancer, or as a result of treatment, can lead to disabilities and, for many patients, result in reduced ability to participate fully in their homes, workplaces, and communities. These problems are not only physical, but also emotional, cognitive, and perhaps spiritual in nature. Some issues occur immediately and persist, while others may develop as

Acknowledgments

The authors would like to acknowledge Ms. Maurene McQuestion for her leadership in the Princess Margaret Cancer Centre Head and Neck Cancer Survivorship Programme. Mr. Matthew Ramotar was instrumental in assisting with manuscript preparation.

References (174)

  • K.A. Hassanein et al.

    Functional status of patients with oral cancer and its relation to style of coping, social support and psychological status

    Br J Oral Maxillofac Surg

    (2001)
  • M.P.J. Offerman et al.

    Goal processes & self-efficacy related to psychological distress in head & neck cancer patients and their partners

    Eur J Oncol Nurs

    (2010)
  • K.M. Brintzenhofe-Szoc et al.

    Mixed anxiety/depression symptoms in a large cancer cohort: Prevalence by cancer type

    Psychosomatics

    (2009)
  • C.A. Espie et al.

    Psychological distress at follow-up after major surgery for intra-oral cancer

    J Psychosomat Res

    (1989)
  • K.L. Shepherd et al.

    Prospective evaluation of quality of life in patients with oral and oropharyngeal cancer: From diagnosis to three months post-treatment

    Oral Oncology

    (2004)
  • M. Hewitt et al.

    From Cancer Patient to Cancer Survivor: Lost in Transition. National Academies Press

    (2006)
  • M.E. McDowell et al.

    Predictors of change in unmet supportive care needs in cancer

    Psychooncology

    (2009)
  • W.K. So et al.

    Quality of life in head and neck cancer survivors at 1 year after treatment: The mediating role of unmet supportive care needs

    Support Care Cancer

    (2014)
  • J. Armes et al.

    Patients’ supportive care needs beyond the end of cancer treatment: A prospective, longitudinal survey

    J Clin Oncol

    (2009)
  • L.E. Carlson et al.

    Screening for distress and unmet needs in patients with cancer: Review and recommendations

    J Clin Oncol

    (2012)
  • K. Hodgkinson et al.

    Assessing unmet supportive care needs in partners of cancer survivors: The development and evaluation of the Cancer Survivors’ Partners Unmet Needs measure (CaSPUN)

    Psycho-Oncology

    (2007)
  • M.A. List et al.

    The performance status scale for head and neck cancer patients and the functional assessment of cancer therapy—head and neck scale. A study of utility and validity

    Cancer

    (1996)
  • D.I. Rosenthal et al.

    Measuring head and neck cancer symptom burden: The development and validation of the M. D. Anderson Symptom Inventory, Head and Neck module

    Head Neck

    (2007)
  • M. Giuliani et al.

    Prevalence and nature of survivorship needs in patients with head and neck cancer

    Head Neck

    (2016)
  • P. McElduff et al.

    The Supportive Care Needs Survey: A Guide to Administration, Scoring and Analysis

    (2004)
  • M. Henry et al.

    Head and neck cancer patients want us to support them psychologically in the posttreatment period: Survey results

    Palliat Support Care

    (2013)
  • M. Balfe et al.

    The unmet supportive care needs of long-term head and neck cancer caregivers in the extended survivorship period

    J Clin Nurs

    (2016)
  • A. Girgis et al.

    The supportive care needs survey for partners and caregivers of cancer survivors: Development and psychometric evaluation

    Psychooncology

    (2011)
  • M.Y. Egan et al.

    Rehabilitation following cancer treatment

    Disabil Rehabil

    (2013)
  • A.C. McGarvey et al.

    Scapular muscle exercises following neck dissection surgery for head and neck cancer: A comparative electromyographic study

    Phys Ther

    (2013)
  • M.C. Fingeret et al.

    Associations among speech, eating, and body image concerns for surgical patients with head and neck cancer

    Head Neck

    (2013)
  • N.O. Sawada et al.

    Depression, fatigue, and health-related quality of life in head and neck cancer patients: A prospective pilot study

    Support Care Cancer

    (2012)
  • K.A. Hutcheson et al.

    Outcomes of elective total laryngectomy for laryngopharyngeal dysfunction in disease-free head and neck cancer survivors

    Otolaryngol Head Neck Surg

    (2012)
  • R. Campos et al.

    Voice analysis after cancer treatment with organ preservation

    Head Neck Oncol

    (2011)
  • A.F. Cooper et al.

    Distinct work-related, clinical and psychological factors predict return to work following treatment in four different cancer types

    Psychooncology

    (2013)
  • A.K. Chaturvedi et al.

    Human papillomavirus and rising oropharyngeal cancer incidence in the United States

    J Clin Oncol

    (2011)
  • T. Ramqvist et al.

    Oropharyngeal cancer epidemic and human papillomavirus

    Emerg Infect Dis

    (2010)
  • L.C. Capozzi et al.

    The impact of physical activity on health-related fitness and quality of life for patients with head and neck cancer: A systematic review

    Br J Sports Med

    (2016)
  • P.M. Tacani et al.

    Retrospective study of the physical therapy modalities applied in head and neck l ymphedema treatment

    Head Neck

    (2016)
  • M.L. McNeely et al.

    Effect of exercise on upper extremity pain and dysfunction in head and neck cancer survivors: A randomized controlled trial

    Cancer

    (2008)
  • L.C. Capozzi et al.

    Patient-reported outcomes, body composition, and nutrition status in patients with head and neck cancer: Results from an exploratory randomized controlled exercise trial

    Cancer

    (2016)
  • S. McEwen et al.

    “I didn’t actually know there was such a thing as rehab”: Survivor, family, and clinician perceptions of rehabilitation following treatment for head and neck cancer

    Support Care Cancer

    (2016)
  • M. Eades et al.

    Effect of an interdisciplinary rehabilitation program on quality of life in patients with head and neck cancer: Review of clinical experience

    Head Neck

    (2013)
  • E. Passchier et al.

    Feasibility and impact of a dedicated multidisciplinary rehabilitation program on health-related quality of life in advanced head and neck cancer patients

    Eur Arch Otorhinolaryngol

    (2016)
  • L.V. Holm et al.

    Participation in cancer rehabilitation and unmet needs: A population-based cohort study

    Support Care Cancer

    (2012)
  • S. McEwen et al.

    Development and pre-testing of a rehabilitation planning consultation for head-and-neck cancer

    Curr Oncol

    (2017)
  • J. Setton et al.

    A multi-institution pooled analysis of gastrostomy tube dependence in patients with oropharyngeal cancer treated with definitive intensity-modulated radiotherapy

    Cancer

    (2015)
  • R.N. Rinkel et al.

    Prevalence of swallowing and speech problems in daily life after chemoradiation for head and neck cancer based on cut-off scores of the patient-reported outcome measures SWAL-QOL and SHI

    Eur Arch Oto-Rhino-Laryngol

    (2015)
  • J. Setton et al.

    A multi-institution pooled analysis of gastrostomy tube dependence in patients with oropharyngeal cancer treated with definitive intensity-modulated radiotherapy

    Cancer

    (2014)
  • C.L. Lazarus et al.

    Functional outcomes and quality of life after chemoradiotherapy: Baseline and 3 and 6 months post-treatment

    Dysphagia

    (2014)
  • Cited by (94)

    • Integrative network analysis reveals subtype-specific long non-coding RNA regulatory mechanisms in head and neck squamous cell carcinoma

      2023, Computational and Structural Biotechnology Journal
      Citation Excerpt :

      Head and neck squamous cell carcinoma (HNSC), including cancers developed in the oral cavity, salivary glands, and oropharynx, accounts for roughly 5% of all cancer types and is the sixth leading cause of cancer-related deaths worldwide [1,2].

    View all citing articles on Scopus

    Conflict of interest: none of the authors have conflicts of interest.

    View full text