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

Balfe, Myles; O’Brien, Katie M.; Timmons, Aileen; Butow, Phyllis; Sullivan, Eleanor O’; Gooberman‐Hill, Rachael; Sharp, Linda

doi:10.1111/jocn.13140

Cited by 35 publications

(38 citation statements)

References 39 publications

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“…9 A study of long-term caregivers of patients with head and neck cancer also found greatest levels of unmet needs for partners of patients to occur in the emotional and health service domains. 10 Head and neck patients with cancer are at high risk for emotional and financial distress, and in our survey depression/anxiety and the associated body and self-image issues are less commonly addressed by respondents. The incidence of depression in patients with HNC is as high as 40%.…”

Section: Discussionmentioning

confidence: 91%

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: 91%

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

et al. 2020

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“…These results are in contrast to 2 previous studies in, respectively, patients with newly diagnosed oral cancer 8 and patients with mixed head and neck cancer up to 5 years after head and neck cancer diagnosis, 3 which found no head and neck cancer-specific unmet needs among its top 10. 27,28 Whether these needs among head and neck cancer caregivers are comparable to those of caregivers of a more homogeneous group of patients who underwent total laryngectomy needs, however, needs to be further investigated. In the study of Wells et al, 4 in mixed patients with head and neck cancer 3 months to 5 years after treatment, comparable with our findings, multiple head and neck cancer-specific unmet needs were reported among its top 10, including needs regarding dry mouth, dental health, swallowing, speech, chewing and eating, and taste loss.…”

Section: Discussionmentioning

confidence: 99%

“…26 Although recently published research among caregivers of patients with head and neck cancer indicated that the perceived burden from the caregivers' perspective was relatively low, 27 about half of all caregivers report at least 1 moderate to high unmet need. 27,28 Whether these needs among head and neck cancer caregivers are comparable to those of caregivers of a more homogeneous group of patients who underwent total laryngectomy needs, however, needs to be further investigated. A currently ongoing Dutch longitudinal cohort study measures supportive care needs among caregivers of patients with head and neck cancer using the caregivers version of the SCNS (ie, the SCNS-P&C), 29 enabling the opportunity to investigate supportive care needs of both head and neck cancer and total laryngectomy caregivers in more detail (over time).…”

Section: Discussionmentioning

confidence: 99%

Unmet supportive care needs in patients treated with total laryngectomy and its associated factors

et al. 2018

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Background The purpose of this study was to investigate unmet supportive care needs in patients treated with total laryngectomy and its associated factors. Methods In this cross‐sectional study, 283 patients who underwent total laryngectomy completed questions on supportive care needs (Supportive Care Needs Survey [SCNS]). Median time since total laryngectomy surgery was 7 years (range 0‐37 years). The prevalence of unmet supportive care needs and its associated factors were investigated using logistic regression analyses. Results Unmet supportive care needs were highest for the head and neck cancer‐specific functioning domain (53%), followed by the psychological (39%), physical and daily living (37%), health system, information, and patient support (35%), sexuality (23%), and lifestyle (5%) domains. Seventy‐one percent reported at least one low, moderate, or high unmet need. Female sex, living alone, and having a voice prosthesis were positively associated with unmet needs on 1 domain (P < .05). A worse health‐related quality of life was associated with unmet needs on all domains. Conclusion The majority of patients who underwent total laryngectomy report at least one low, moderate, or high unmet supportive care need.

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“…De este modo, se puede observar que los familiares de supervivientes de cáncer tienen necesidades psicológicas, en particular en relación con el estrés y con hacer frente a la carga de proporcionar un cuidado físico junto con la preocupación por la salud del superviviente 19 , las dificultades en la gestión de sus propias respuestas emocionales al tiempo que proporcionan apoyo a los demás 27,29 , las preocupaciones sobre el futuro de la persona que cuidan 23,26,30 y ayuda para encontrar un sentido de esperanza 23 . Especialmente cuando se ha evidenciado que los familiares muestran angustia emocional incluso a los cincos años del diagnóstico 25 .…”

Section: Necesidad De Apoyo Emocional Y Espiritualunclassified

“…La información es una de las necesidades prioritarias de los familiares en la etapa de larga supervivencia 29,30 . Éstos solicitan información sobre cuestiones muy diversas tales como: el diagnostico de cáncer 25 , los beneficios y efectos secundarios del tratamiento 27 , el pronóstico del paciente superviviente 21 , las posibilidades de recidiva 19 , información sobre el riesgo familiar y consejo genético 21 e información acerca de cobertura sanitaria y seguros médicos así como ayudas económicas por incapacidad laboral 25,27,30 .…”

Section: Necesidad De Informaciónunclassified

Necesidades de los familiares en la etapa de larga supervivencia de cáncer

Oriol¹,

García-Vivar

2019

Enferm Oncol

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Introducción: El cáncer es una experiencia familiar en la que los supervivientes y sus familiares vivencian cambios a corto y largo plazo, especialmente en la esfera emocional. La preocupación por la recidiva o la incertidumbre del futuro generan niveles de estrés significativo en la familia. A pesar de ello, existe escasa investigación sobre las necesidades de los familiares en la supervivencia de cáncer. Objetivos: Identificary describir las necesidades de los familiares de pacientes supervivientes de cáncer en la etapa de larga supervivencia. Métodos: Revisión narrativa con metodología sistemática de selección de artículos en cuatro bases de datos publicados entrediciembre de 2015 y marzo de 2018, y revisión manual de las 10 revistas internacionales más relevantes del ámbito de la oncología. Los 14 artículos identificados fueron analizados y la calidad de estos fue también evaluada. Resultados:Los familiares, denominados como “supervivientes secundarios”, tienen necesidades específicas que precisan ser abordadas por los profesionales. Estas necesidades fueron clasificadas en las siguientes categorías: apoyo emocional y espiritual, información, manejo de cuidados al superviviente y atención al propio familiar. Conclusiones: Esta revisión recopila información que demuestra que la familia debe considerarse como unidad de cuidado en la larga supervivencia de cáncer. Además, proporciona un punto de partida para el desarrollo de nuevas guías de práctica clínica que promuevan la evaluación e intervención familiar, no solo en las fases iniciales del diagnóstico y tratamiento del cáncer, sino también en la larga supervivencia de cáncer.

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

Cited by 35 publications

References 39 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

Unmet supportive care needs in patients treated with total laryngectomy and its associated factors

Necesidades de los familiares en la etapa de larga supervivencia de cáncer

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