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Open Access 01-03-2016 | Original Article

An online self-care education program to support patients after total laryngectomy: feasibility and satisfaction

Authors: Ingrid C. Cnossen, Cornelia F. van Uden-Kraan, Simone E. J. Eerenstein, Femke Jansen, Birgit I. Witte, Martin Lacko, José A. Hardillo, Jimmie Honings, Gyorgy B. Halmos, Noortje L. Q. Goedhart-Schwandt, Remco de Bree, C. René Leemans, Irma M. Verdonck-de Leeuw

Published in: Supportive Care in Cancer | Issue 3/2016

Abstract

Purpose

The purpose of this study was to investigate the feasibility of an online self-care education program supporting early rehabilitation of patients after total laryngectomy (TLPs) and factors associated with satisfaction.

Methods

Health care professionals (HCPs) were invited to participate and to recruit TLPs. TLPs were informed on the self-care education program “In Tune without Cords” (ITwC) after which they gained access. A study specific survey was used (at baseline T0 and postintervention T1) on TLPs’ uptake. Usage, satisfaction (general impression, willingness to use, user-friendliness, satisfaction with self-care advice and strategies, Net Promoter Score (NPS)), sociodemographic, and clinical factors were analyzed.

Results

HCPs of 6 out of 9 centers (67 % uptake rate) agreed to participate and recruited TLPs. In total, 55 of 75 TLPs returned informed consent and the baseline T0 survey and were provided access to ITwC (73 % uptake rate). Thirty-eight of these 55 TLPs used ITwC and completed the T1 survey (69 % usage rate). Most (66 %) TLPs were satisfied (i.e., score ≥7 (scale 1–10) on 4 survey items) with the self-care education program (mean score 7.2, SD 1.1). NPS was positive (+5). Satisfaction with the self-care education program was significantly associated with (higher) educational level and health literacy skills (P = .004, P = .038, respectively). No significant association was found with gender, age, marital status, employment status, Internet use, Internet literacy, treatment modality, time since total laryngectomy, and quality of life.

Conclusion

The online self-care education program ITwC supporting early rehabilitation was feasible in clinical practice. In general, TLPs were satisfied with the program.

Torre LA, Bray F, Siegel RL et al (2015) Global cancer statistics 2012. CA Cancer J Clin 65(2):87–108. doi:10.3322/caac.21262 CrossRefPubMed

National Cancer Institute. Available at: http://seer.cancer.gov/statfacts/html/laryn.html. Accessed Jul 2015

The Netherlands Cancer Registry. Available at: http://www.cijfersoverkanker.nl. Accessed Jul 2015

Timmermans AJ, Krap M, Hilgers FJM et al (2012) Spraakrevalidatie na een totale laryngectomie. Ned Tijdschr Tandheelkd 119:357–361. doi:10.5177/ntvt.2012.07/08.12132 CrossRefPubMed

Dooks P, McQuestion M, Goldstein D et al (2012) Experiences of patients with laryngectomies as they reintegrate into their community. Support Care Cancer 20:489–498. doi:10.1007/s00520-011-1101-4 CrossRefPubMed

Singer S, Danker H, Guntinas-Lichius O et al (2014) Quality of life before and after total laryngectomy: results of a multicenter prospective cohort study. Head Neck 36(3):359–368. doi:10.1002/hed.23305 CrossRefPubMed

Murnovic G, Hocevar-Boltezar I (2014) Olfaction and gustation abilities after a total laryngectomy. Radiol Oncol 48(3):301–306. doi:10.2478/raon-2013-0070

Giordano L, Toma S, Teggi R et al (2011) Satisfaction and quality of life in laryngectomees after voice prosthesis rehabilitation. Folia Phoniatr Logop 63(5):231–6. doi:10.1159/000323185 CrossRefPubMed

Maclean J, Cotton S, Perry A (2009) Post laryngectomy: it’s hard to swallow: an Australian study of prevalence and self-reports of swallowing function after a total laryngectomy. Dysphagia 24(2):172–179. doi:10.1007/s00455-008-9189-5 CrossRefPubMed

10.

Berry DL, Hong F, Halpenny B et al (2014) The electronic self-report assessment and intervention for cancer: promoting patient verbal reporting of symptom and quality of life issues in a randomized controlled trial. BMC Cancer 12; 14:513. doi: 10.1186/1471-2407-14-513

11.

Hinni ML, Crujido LR (2013) Laryngectomy rehabilitation: a perspective from the United States of America. Review. Curr Opin Otolaryngol Head Neck Surg 21:218–223CrossRefPubMed

12.

Foster C, Fenlon D (2011) Recovery and self-management support following primary cancer treatment. Br J Cancer 105:521–528CrossRef

13.

Gao WJ, Yuan CR (2011) Self-management programme for cancer patients: a literature review. Int Nurs Rev 58:288–295CrossRefPubMed

14.

Parker V, Bellamy D, Rossiter R et al (2014) The experiences of HNC patients requiring major surgery. Cancer Nurs 37(4):263–270CrossRefPubMed

15.

Bickford C, Coveney J, Baker J et al (2013) Living with the altered self: a qualitative study of life after total laryngectomy. Int J Speech-Lang Pathol 15(3):324–333CrossRefPubMed

16.

Kelders SM, Pots WT, Oskam MJ et al (2013) Development of a web-based intervention for the indicated prevention of depression. BMC Med Inf Decis Making 13:26CrossRef

17.

Van Gemert-Pijnen JE, Nijland N, van Limburg M et al (2011) A holistic framework to improve the uptake and impact of eHealth technologies. J Med Internet Res 13(4), e111. doi:10.2196/jmir.1672 CrossRefPubMedPubMedCentral

18.

Yen P, Bakken S (2012) Review of health information technology usability study methodologies. J Am Ned Inf Assoc 19:413–422CrossRef

19.

Cnossen IC, Leemans CR, de Bree R et al (2012) Building an eHealth portal for patients after total laryngectomy for laryngeal cancer. Available at: http://www.logopedie.nl/bestanden/cplol/abstracts/11/11.3_building_an_ehealth_portal_for_patients_after_total_laryngectomy_for_laryngeal_cancer.pdf

20.

Nederlandse Werkgroep voor Hoofd Hals Tumoren. Dutch Head and Neck Oncology Cooperative Group (NWHHT). Available at: http://www.nwhht.nl/. Accessed Jul 2015

21.

In Tune without Cords. Available at: http://www.verderzonderstembanden.nl/. Accessed Jul 2015

22.

Reicheld F, Markey R (2011) The ultimate question 2.0: how net promoter companies thrive in a customer-driven world. Harvard Business Review Press

23.

Fayers P, Bottomley A (2002) Quality of life research within the EORTC-the EORTC QLQ - C30. European Organisation for Research and Treatment of Cancer. Eur J Cancer 38(Suppl 4):S125–S133CrossRefPubMed

24.

Van der Vaart R, Drossaert CH, Taal E et al (2012) Validation of the Dutch functional, communicative and critical health literacy scales. Patient Educ Couns 89:82–88CrossRefPubMed

25.

Fransen MP, van Schaik TM, Twickler TB et al (2011) Applicability of internationally available health literacy measures in the Netherlands. J Health Commun 16:134–149CrossRefPubMed

26.

Ishikawa H, Takeuchi T, Yano E (2008) Measuring functional, communicative and critical health literacy among diabetic patients. Diabetes Care 31:874–879CrossRefPubMed

27.

National Institute of Health. Available at: http://www.nih.gov/clearcommunication/healthliteracy.htm. Accessed Jul 2015

28.

Heijmans M, Waverijn G, Rademakers J et al (2015) Functional, communicative and critical health literacy of chronic disease patients and their importance for self-management. Patient Educ Couns 98:41–48CrossRefPubMed

29.

Cnossen IC, van Uden-Kraan CF, Rinkel RNPM et al (2014) Multimodal guided self-help exercise program to prevent speech, swallowing, and shoulder problems among HNC patients: a feasibility study. J Med Internet Res 16(3):e74CrossRefPubMedPubMedCentral

30.

Shinn EH, Basen-Engquist K, Baum G et al (2013) Adherence to preventive exercises and self-reported swallowing outcomes in post-radiation head and neck cancer patients. Head Neck 35(12):1707–1712CrossRefPubMedPubMedCentral

31.

van den Brink JL, Moorman PW, de Boer MF et al (2005) Involving the patient: a prospective study on use, appreciation and effectiveness of an information system in head and neck cancer care. Int J Med Inform 74:839–849CrossRefPubMed

32.

Thompson HJ, Thielke SM (2009) How do health care providers perceive technologies for monitoring adults? Conf Proc IEEE Eng Med Biol Soc 4315–8

33.

Peterson SK, Shinn EH, Basen-Engquist K et al (2013) Identifying early dehydration risk with home-based sensors during radiation treatment: a feasibility study on patients with head and neck cancer. J Natl Cancer Inst Monogr 47:162–168CrossRef

34.

Head BA, Keeney C, Studts JL et al (2011) Feasibility and acceptance of a telehealth intervention to promote symptom management during treatment for head and neck cancer. J Support Oncol 1;9(1):e1-e11

35.

Rogers SN, Rozek A, Aleyaasin N et al (2012) Internet use among HNC survivors in the north west of England. Br J Oral Maxillofac Surg 50:208–214CrossRefPubMed

36.

Charalambous A (2013) Variations in patient satisfaction with care for breast, lung, head and neck and prostate cancers in different cancer care settings. Eur J Oncol Nurs 17:588–595CrossRefPubMed

37.

Hill-Kayser CE, Vachani C, Hampshire MK et al (2012) High level use and satisfaction with internet-based breast cancer survivorship care plans. Breast J 18(1):97–99. doi:10.1111/j.1524-4741.2011.01195.x CrossRefPubMed

38.

Kontos E, Blake KD, Chou WS et al (2014) Predictors of eHealth usage: insights on the digital divide from the health information national trends survey 2012. J Med Internet Res 16(7):e172CrossRefPubMedPubMedCentral

39.

Komenaka IK, Nodora JN, Machado L et al (2014) Health literacy assessment and patient satisfaction in surgical practice. Surgery 155:374–383CrossRefPubMed

40.

Finney Rutten LJ, Agunwamba AA, Wilson P et al (2015) Cancer-related information seeking among cancer survivors: trends over a decade (2003–2013). J Cancer Educ. doi:10.1007/s13187-015-0802-7

41.

Lyles CR, Sarkar U (2015) Health literacy, vulnerable patients, and health information technology use: where do we go from here? J Gen Intern Med. doi:10.1007/s11606-014-3166-5

42.

Conway DI, Brenner DR, McMahon AD et al (2015) Estimating and explaining the effect of education and income on head and neck cancer risk: INHANCE consortium pooled analysis of 31 case–control studies from 27 countries. Int J Cancer 136:1125–1139CrossRefPubMedPubMedCentral

43.

Koay K, Schofield P, Gough K et al (2013) Suboptimal health literacy in patients with lung cancer and head and neck cancer. Support Care Cancer. doi:10.1007/s00520-013-1780-0 PubMed

44.

Narwani V, Nalamada K, Lee M et al (2014) Readability and quality assessment of Internet-based patient education materials related to laryngeal cancer. Head Neck. doi:10.1002/hed.23939 PubMed

45.

D’Souza V, Blouin E, Zeitouni A et al (2013) Do multimedia based information services increase knowledge and satisfaction in head and neck cancer patients? Oral Oncol 49(9):943–949. doi:10.1016/j.oraloncology.2013.06.005 CrossRefPubMed

Title: An online self-care education program to support patients after total laryngectomy: feasibility and satisfaction
Authors: Ingrid C. Cnossen
Cornelia F. van Uden-Kraan
Simone E. J. Eerenstein
Femke Jansen
Birgit I. Witte
Martin Lacko
José A. Hardillo
Jimmie Honings
Gyorgy B. Halmos
Noortje L. Q. Goedhart-Schwandt
Remco de Bree
C. René Leemans
Irma M. Verdonck-de Leeuw
Publication date: 01-03-2016
Publisher: Springer Berlin Heidelberg
Published in: Supportive Care in Cancer / Issue 3/2016
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-015-2896-1

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