Survivorship care experiences, information, and support needs of patients with oral and oropharyngeal cancer

Manne, Sharon L.; Hudson, Shawna V.; Baredes, Soly; Stroup, Antoinette M.; Virtue, Shannon Myers; Paddock, Lisa E.; Kalyoussef, Evelyne

doi:10.1002/hed.24351

Cited by 21 publications

(26 citation statements)

References 57 publications

(110 reference statements)

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“…This is consistent with a recent study of oral/oropharyngeal cancer survivors in which only 35% of those who were surveyed between 2 and 5 years after their diagnosis had received a written treatment summary. 8 This may reflect challenges with implementation of a written process. In December of 2017, the CoC decreased the minimum required percentage of delivered survivorship care plans to eligible patients for accredited programs from 75% to 50% for 2018, an indication of the state of penetrance of this initiative.…”

Section: Discussionmentioning

confidence: 99%

Survivorship support in head and neck cancer: American Head and Neck Society survey

et al. 2020

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Background: The value of supporting cancer survivors beyond formal treatment has become increasingly recognized among clinicians who care for patients with head and neck cancer. Methods: A survey was developed by the American Head and Neck Society (AHNS) Survivorship Committee and distributed to members of the AHNS electronically. Results: The survey was distributed to 1403 AHNS members, with 202 responses (14.4%). Among survivorship topics, respondents were most likely to address detection of recurrence/second primary malignancies (97.5%), dysphagia (93.1%), and thyroid function (90.1%) with their patients; they were least likely to address sleep disturbance/apnea (27.7%) and body and self-image issues (29.7%.) Less than half provide patients with a written treatment summary (43.1%) or follow-up care plan (36.9%). Conclusions: These results highlight the need for improved survivorship care planning and offer an opportunity for the development of educational and survivorship research in head and neck cancer care. K E Y W O R D S head and neck cancer, surveillance, survivorship, treatment plan

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Section: Discussionmentioning

confidence: 99%

Survivorship support in head and neck cancer: American Head and Neck Society survey

et al. 2020

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“…In the present study, informational needs of cancer patients were awareness of the nature of the disease, Its management, and different cancer treatments other than chemical treatments. According to previous studies, the most important informational needs of patients with head, neck, oral, pharyngeal, gynecologic, and gastrointestinal cancer, related to physical, medical, emotional, practical, social, and spiritual domains; respectively (Papadakos et al, 2017;Giuliani et al, 2016;Manne et al, 2016;Papadakos et al, 2012;Papadakos et al, 2015;Khoshnood et al, 2018a). On the other hand, some factors related to ways of providing information to patients.…”

Section: Discussionmentioning

confidence: 99%

Informational Needs of Patients with Cancer: A Qualitative Content Analysis

Khoshnood

Dehghan

Iranmanesh

et al. 2019

Asian Pac J Cancer Prev

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Section TitleOne of the most important needs of patients with cancer is informational needs. Getting relevant information about the disease can lead to a proper decision making, better response to treatment, lower levels of anxiety, and higher levels of quality of life. Therefore, the current study aimed to determine the informational needs of patients with cancer in southeast Iran. Materials and Methods:This conventional qualitative content analysis was done using a descriptive-explorative design. Data collection was done through conducting deep semi-structured interviews from September 2017 to March 2018 in cancer treatment centers of Kerman University of Medical Science, Iran. Data saturation was achieved after interviewing with 13 patients during 15 interviews. The patients were asked to narrate their experience about informational needs of cancer patients. The following concepts were considered: the unit of analysis, meaning unit, condensation, code, sub-category, category, and main category. Results:The results of the present study showed that informational needs of these patients could be categorized under one main category called awareness-oriented needs, including three subcategories. These subcategories included lack of knowledge about the nature of the disease, inappropriate control of the disease due to lack of knowledge, and lack of knowledge about cancer treatment methods. Conclusion:Results showed that patients with cancer tended to know what is the cancer and the ways of cancer treatment and complications. Therefore, it is suggested to perform further studies cultivating the awareness of cancer patients in these areas. Therefore So, It should be noted that designing and implementation of this needs assessment provide a comprehensive way to consult and collaborate with health care professionals, patients, and their families.

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“…3 45 It has also been tested for content, face, and convergent validity. 45 When mapped against our conceptual 16 Flexen et al, 17 Wells et al, 10 Ghazali et al, 18 Alt-Epping et al, 28 Manne et al, 29 Henry et al, 30 Chen et al, 31 Butow et al, 32 Boyes et al, 33 So et al, 34 framework, SUNS had 58% of content relevant to HNC, failing to address concerns such as physical needs and symptom control, activities of daily living, dental, nutritional, and sexual needs.…”

Section: Survivors Unmet Needs Survey (Suns)mentioning

confidence: 99%

Content comparison of unmet needs self‐report measures used in patients with head and neck cancer: A systematic review

et al. 2019

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Objective Morbidity from head and neck cancers (HNCs) and their treatment are significant, given their proximity to anatomical sites impacting facial appearance and function. Assessing the needs of HNC patients throughout their cancer journey is critical to informing quality care and improving quality of life. We aimed to identify available unmet needs measures in the HNC setting and appraise their content and psychometric properties. Methods We conducted a systematic search of five electronic databases (July 2007‐July 2019) to identify studies of unmet needs in patients with HNC. In addition, three web‐based patient‐reported outcome measures (PROMs) databases were searched for unmet needs measures. Citations were screened for eligibility and identified measures reviewed for content coverage and psychometric properties. From identified measures and literature, a conceptual framework with 12 clinically relevant aspects of unmet needs was developed and used to assess the conceptual coverage of available unmet needs measures. Results Literature search identified 273 records of which 28 studies assessing unmet needs in HNC cancer met eligibility criteria. Seven unmet needs measures were identified from retrieved studies and seven additional measures from PROM databases. Thus, 14 measures in total were reviewed. Content mapping revealed that three measures demonstrated excellent content validity (greater than 80% conceptual coverage): Patient Concerns Inventory (PCI), Needs Assessment for Advanced Cancer Patients (NA‐ACP), and James Supportive Care Screening (JSCS). Conclusion We recommend PCI be used to measure unmet needs in the HNC setting considering the importance of content validity over quantitative psychometric properties.

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Survivorship care experiences, information, and support needs of patients with oral and oropharyngeal cancer

Cited by 21 publications

References 57 publications

Survivorship support in head and neck cancer: American Head and Neck Society survey

Survivorship support in head and neck cancer: American Head and Neck Society survey

Informational Needs of Patients with Cancer: A Qualitative Content Analysis

Content comparison of unmet needs self‐report measures used in patients with head and neck cancer: A systematic review

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