A Participatory Design Approach to Develop a Web-Based Self-Care Program Supporting Early Rehabilitation among Patients after Total Laryngectomy

Cnossen, Ingrid C.; Uden–Kraan, Cornelia F. van; Eerenstein, Simone E. J.; Rinkel, Rico N. P. M.; Aalders, IJke J.; Berg, Klaske van den; Goede, Cees J. T. de; Stijgeren, Ans J. van; Cruijff-Bijl, Yvonne; Bree, Remco de; Leemans, C. René; Leeuw, Irma M. Verdonck‐de

doi:10.1159/000441251

Cited by 28 publications

(48 citation statements)

References 32 publications

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“…Previous research showed that this application is feasible and valued by both patients who undergo total laryngectomy and their care providers. 18,24 Currently, the (cost)effectiveness of the exercise program is being investigated among patients who underwent total laryngectomy. 25 In addition to head and neck cancer and total laryngectomy-specific unmet needs, psychological, physical, and daily living unmet needs were often reported in our study (respectively, 39% and 37% of all patients reported at least 1 low, moderate, or high unmet need).…”

Section: Discussionmentioning

confidence: 99%

“…These patients encounter several adjustments in normal daily functioning, which they have to live with for the rest of their lives, including adjustments in airway management, smell, swallowing, and speech. 18 No study has, however, quantitatively investigated the prevalence of unmet supportive care needs among patients treated with total laryngectomy in particular. 14,17 In a focus-group study among patients who underwent total laryngectomy (2-22 years after total laryngectomy surgery), several supportive care needs were identified, including psychosocial care needs and needs related to treatment-related changes in physical functioning, including eating, swallowing, neck and shoulder pain, speech and tracheostomy, and voice prosthesis care.…”

Section: Introductionmentioning

confidence: 99%

“…14,17 In a focus-group study among patients who underwent total laryngectomy (2-22 years after total laryngectomy surgery), several supportive care needs were identified, including psychosocial care needs and needs related to treatment-related changes in physical functioning, including eating, swallowing, neck and shoulder pain, speech and tracheostomy, and voice prosthesis care. 18 No study has, however, quantitatively investigated the prevalence of unmet supportive care needs among patients treated with total laryngectomy in particular.…”

Section: Introductionmentioning

confidence: 99%

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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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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2018

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“…Such a guided self-help program is expected to be easily accessible for patients and limits burden on time of healthcare providers [ 29 ]. In the first development phase [ 30 ], a needs assessment was performed by means of one focus group in patients and their partners ( n = 9) and four multidisciplinary meetings with healthcare professionals involved in (after)care for patients treated with TL ( n = 11). It was found that a self-help application should not only include an exercise program, but also information modules comprising of daily care for the tracheostomy or voice prosthesis, nutrition, smelling and speech quality.…”

Section: Introductionmentioning

confidence: 99%

“…In the second phase [ 30 ], a prototype of the newly developed self-help application, including an exercise program and self-care education program (i.e. information modules) was developed.…”

Section: Introductionmentioning

confidence: 99%

Effectiveness and cost-utility of a guided self-help exercise program for patients treated with total laryngectomy: protocol of a multi-center randomized controlled trial

et al. 2016

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BackgroundTotal laryngectomy with or without adjuvant (chemo)radiation often induces speech, swallowing and neck and shoulder problems. Speech, swallowing and shoulder exercises may prevent or diminish these problems. The aim of the present paper is to describe the study, which is designed to investigate the effectiveness and cost-utility of a guided self-help exercise program built into the application “In Tune without Cords” among patients treated with total laryngectomy.Methods/designPatients, up to 5 years earlier treated with total laryngectomy with or without (chemo)radiation will be recruited for participation in this study. Patients willing to participate will be randomized to the intervention or control group (1:1). Patients in the intervention group will be provided access to a guided self-help exercise program and a self-care education program built into the application “In Tune without Cords”. Patients in the control group will only be provided access to the self-care education program. The primary outcome is the difference in swallowing quality (SWAL-QOL) between the intervention and control group. Secondary outcome measures address speech problems (SHI), shoulder disability (SDQ), quality of life (EORTC QLQ-C30, QLQ-H&N35 and EQ-5D), direct and indirect costs (adjusted iMCQ and iPCQ measures) and self-management (PAM). Patients will be asked to complete these outcome measures at baseline, immediately after the intervention or control period (i.e. at 3 months follow-up) and at 6 months follow-up.DiscussionThis randomized controlled trial will provide knowledge on the effectiveness of a guided self-help exercise program for patients treated with total laryngectomy. In addition, information on the value for money of such an exercise program will be provided. If this guided self-help program is (cost)effective for patients treated with total laryngectomy, the next step will be to implement this exercise program in current clinical practice.Trial registrationNTR5255 Protocol version 4 date September 2015.

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Health-related and cancer-related Internet use by patients treated with total laryngectomy

Uden–Kraan

Jansen

Lissenberg‐Witte

et al. 2019

Support Care Cancer

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ObjectivesTo investigate among patients treated with a total laryngectomy (TL) (1) Internet-use and Internet use to search for information on health and cancer (content); (2) which patients are most likely to use the Internet in general, for health-related and cancer-related purposes; (3) which other types of eHealth (community, communication, care) are used; and (4) preferences towards future use.MethodsPatient members of the Dutch TL patient society were asked to complete a questionnaire on Internet use, health-related and cancer-related Internet use, types of eHealth, preferences towards future use, socio-demographics, clinical factors, and quality of life (QOL). Factors associated with Internet use and health-related and cancer-related Internet use were investigated using stepwise logistic regression analysis.ResultsIn total, 279 TL patients participated, of whom 68% used the Internet. Of these, 63% used the Internet to search for information on health and 49% on cancer. Younger and higher educated TL patients and those with better QOL used the Internet more often. Patients with worse QOL searched more often for health-related information. Younger patients and those with shorter time since TL searched more often for cancer-related information. The current use of eHealth for communication, community, and care purposes among Internet users was limited (range, 2 to 15%). Many were interested in using these types of eHealth in the future (range, 21 to 72%).ConclusionThe majority used the Internet, especially to search for information on health and cancer, but only few for communication, community, or care purposes. Many were interested in future use.

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A Participatory Design Approach to Develop a Web-Based Self-Care Program Supporting Early Rehabilitation among Patients after Total Laryngectomy

Cited by 28 publications

References 32 publications

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

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

Effectiveness and cost-utility of a guided self-help exercise program for patients treated with total laryngectomy: protocol of a multi-center randomized controlled trial

Health-related and cancer-related Internet use by patients treated with total laryngectomy

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