Looking Beyond Disfigurement: The Experience of Patients With Head and Neck Cancer: D-3 Melissa Henry;Angela Ho;Sylvie Lambert;Franco Carnevale;Brian Greenfield;Christina MacDonald;Alex Mlynarek;Anthony Zeitouni;Zeev Rosberger;Michael Hier;Martin Black;Karen Kost;Saul Frenkiel; Pscyho-Oncology

Looking Beyond Disfigurement: The Experience of Patients With Head and Neck Cancer

Background: Breast cancer has become one of the most frequently diagnosed carcinomas and the leading cause of cancer deaths. The substantial growth in the number of breast cancer patients has put great pressure on health services. Meanwhile, the information patients need has increased and become more complicated. Therefore, a comprehensive and in-depth understanding of their information needs is urgently needed to improve the quality of health care. However, previous studies related to the information needs of breast cancer patients have focused on different perspectives and have only contributed to individual results. A systematic review and synthesis of breast cancer patients’ information needs is critical.
Objective: This paper aims to systematically identify, evaluate, and synthesize existing primary qualitative research on the information needs of breast cancer patients.
Methods: Web of Science, EBSCO, Scopus, ProQuest, PubMed, PsycINFO, The Cochrane Library, the Cumulative Index to Nursing and Allied Health Literature were searched on February 12 and July 9, 2019, to collect relevant studies. A Google Scholar search, interpersonal network recommendations, and reference chaining were also conducted. Eligible studies included qualitative or mixed-methods studies focusing on the information needs (across the cancer continuum) of breast cancer patients or their social networks. Subsequently, a Critical Appraisals Skills Programme checklist was used to assess the quality of included research. The results, findings, and discussions were extracted. Data analysis was guided by the theory-generating meta-synthesis and grounded theory approach.
Results: Three themes, 19 categories, and 55 concepts emerged: (1) incentives (physical abnormality, inquiry from others, subjective norm, and problems during appointments); (2) types of information needs (prevention, etiology, diagnosis, clinical manifestation, treatment, prognosis, impact and resumption of normal life, scientific research, and social assistance); (3) moderating variables (attitudes, health literacy, demographic characteristics, disease status, as well as political and cultural environment). The studies revealed that the information needs of breast cancer patients were triggered by different incentives. Subsequently, the patients sought a variety of information among different stages of the cancer journey. Five types of variables were also found to moderate the formation of information needs.
Conclusions: This study contributes to a thorough model of information needs among breast cancer patients and provides practical suggestions for health and information professionals.

/pdf/information-needs-of-breast-cancer-patients-theory-2h4qoq5wp9.pdf

Information Needs of Breast Cancer Patients: Theory-Generating Meta-Synthesis

State of Rehabilitation Research in the Head and Neck Cancer Population: Functional Impact vs. Impairment-Focused Outcomes

The concept of value-based health care (VBHC) was articulated more than a decade ago. However, its clinical implementation remains an on-going process and a particularly demanding one for the domain of head and neck cancer (HNC). These cancers often present with fast growing tumors in functionally and cosmetically sensitive sites and afflict patients with differing circumstances and comorbidity. Moreover, the various treatment modalities and protocols have different effects on functional outcomes. Hence, the interpretation of what constitutes VBHC in head and neck oncology remains challenging. This monograph reviews developments in specific aspects of VBHC for HNC patients, including establishment of registries and quality indices (such as infrastructure, process, and outcome indicators). It emphasizes the importance of the multidisciplinary team, “time to treatment intervals,” and adherence to guidelines. The discussion addresses major indicators including survival, quality of life and functional outcomes, and adverse events. Also, strengths and weaknesses of nomograms, prognostic and decision models, and variation of care warrant attention. Health care professionals, together with patients, must properly define quality and relevant outcomes, both for the individual patient as well as the HNC population. It is essential to capture and organize the relevant data so that they can be analyzed and the results used to improve both outcomes and value.

/pdf/value-and-quality-of-care-in-head-and-neck-oncology-49l5s3r48t.pdf

Value and Quality of Care in Head and Neck Oncology.

Surgery is the treatment of choice in most head and neck cancers. Very often, the surgery is radical with high impact on the psychosocial, functional and aesthetic fields. The aim of this study is to gain a deeper understanding of the patient's, clinician's and key informant's point of view when surgery is proposed, to improve the quality of pathways in terms of patients' practical, psychological and relational needs. We followed a Grounded Theory approach with semi-structured interviews. Seventeen participants (six patients, nine healthcare professionals and two volunteers) were interviewed immediately before surgery. The study generated a process of "persuading the patient of an obligation" as the core category. The other principal categories that emerged highlighted the patients' doubts and fears regarding the surgery consequences and, in parallel, strategies employed by the healthcare professionals to rebut hindering issues impeding surgery. In particular, healthcare professionals involved patients in an affiliation process through simplified communication to sustain the choice of surgery; the family plays a supportive role in this process. The interplay between the organisational process and patients' experience results in "I will let you convince me" at the end of the decision-making process, where the main aim was to save and be saved.

/pdf/undergoing-head-and-neck-cancer-surgery-a-grounded-theory-4o87tj6y67.pdf

Undergoing head and neck cancer surgery: A grounded theory.

The aim was to conduct a systematic review and a meta-synthesis of primary qualitative studies exploring experiences of head and neck cancer patients (HNC) undergoing radio and/or chemotherapy, in order to provide a better understanding of this phenomenon and supply new directions for care and clinical practice. Six databases were systematically searched, and 13 studies were included. The meta-synthesis methodology was adopted to conceptualise the way in which patients lived their cancer journey and the impact of treatments on their daily life. Four themes embracing various aspects of HNC patients' experiences were identified: (a) self-body image and perceived quality of life; (b) experiences and treatment of symptoms; (c) cancer journey; and (d) the relationship with health professionals. The finding demonstrates the importance of acknowledging that treatment sequelae and patients' daily issues do not appear, develop and affect people's lives in isolation and should be considered and analysed as a whole within the social and cultural context of patients' lives. Further research is needed to explore the treatment experience of HNC patients throughout their cancer journey with a more holistic approach that involves health professionals, caregivers and other family members and peers in the community.

Listening to the voice of patients with head and neck cancer: A systematic review and meta-synthesis

Cancer is recognized as a family illness as many head and neck cancer (HNC) patients after treatment require assistance from a family caregiver throughout the rest of their life. The purpose of this study was to explore the lived experience of primary family caregivers of HNC patients dealing with laryngectomy regarding their complex supportive role. Phenomenological study based on individual interviews of twelve primary caregivers of HNC patients, recruited by purposeful sampling. Interview contents were analyzed in depth, in accordance with Colaizzi’s descriptive analysis framework, to explore and identify significant themes and subthemes. Analysis evidenced three main topics and subthemes embracing various aspects of the caregiver’s lived experiences: (1) experiencing disease and the pathway of care, (2) handling changes to everyday life, and (3) support received by others. Given the essential role the caregiver has in the patient’s post-treatment recovery, future planning of HNC patient care must consider the caregivers’ needs. In order to guarantee an appropriate and effective health professional care, it is important to consider caregivers’ issues and needs as part of HNC patient care planning from the diagnosis to the follow-up.

Providing care to a family member affected by head and neck cancer: a phenomenological study

The name of Luca Ghirotto was incorrectly captured in the original manuscript.

/pdf/correction-to-providing-care-to-a-family-member-affected-by-2qxwmr87sd.pdf

Correction to: providing care to a family member affected by head and neck cancer: a phenomenological study.

Surviving cancer following total laryngectomy: a phenomenological study

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Listening to the voice of patients with head and neck cancer: A systematic review and meta-synthesis

Providing care to a family member affected by head and neck cancer: a phenomenological study

Correction to: providing care to a family member affected by head and neck cancer: a phenomenological study.

Surviving cancer following total laryngectomy: a phenomenological study