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Research Article

Improving photoprotection in adults with xeroderma pigmentosum: personalisation and tailoring in the ‘XPAND’ intervention

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Pages 543-572 | Received 10 Feb 2020, Accepted 18 Oct 2020, Published online: 07 Nov 2020

References

  • Anderson, R., Walburn, J., & Morgan, M. (2017). Experiences of stigma over the lifetime of people with xeroderma pigmentosum: A qualitative interview study in the United Kingdom. Journal of Health Psychology, 24, 2031–2041. doi:10.1177/1359105317714643
  • Anderson, R., Walburn, J., & Morgan, M. (2019). Approaches to photoprotection and normalization in highly adherent families of children with xeroderma pigmentosum in the United Kingdom. Qualitative Health Research, 30(8), 1275–1286. doi:10.1177/1049732319826561
  • Bradford, P. T., Goldstein, A. M., Tamura, D., Khan, S. G., Ueda, T., Boyle, J., … Kraemer, K. H. (2011). Cancer and neurologic degeneration in xeroderma pigmentosum: Long term follow-up characterises the role of DNA repair. Journal of Medical Genetics, 48(3), 168–176. doi:10.1136/jmg.2010.083022
  • Canfield, M., Norton, S., Walburn, J., Morrison-Bowen, N., Sainsbury, K., Araujo-Soares, V., … Weinman, J. (2019). Facial photoprotection in xeroderma pigmentosum (XP) patients: Validation of a new self-reported questionnaire of adherence. Photodermatology, Photoimmunology and Photomedicine, 36(2), 118–125. doi:10.1111/phpp.12519
  • Clarke, A., Thompson, A. R., Jenkinson, E., Rumsey, N., & Newell, R. (2013). CBT for appearance anxiety: Psychosocial interventions for anxiety due to visible difference. Chichester: John Wiley & Sons, Ltd.
  • Coulter, A., Entwistle, V. A., Eccles, A., Ryan, S., Shepperd, S., & Perera, R. (2015). Personalised care planning for adults with chronic or long-term health conditions. Cochrane Database of Systematic Reviews, 2012(3), 1–129. doi:10.1002/14651858.CD010523.pub2
  • Dixon, D., & Johnston, M. (2010). Health behaviour change competency framework: Competences to deliver interventions to change lifestyle behaviours that affect health. Scottish Government. Retrieved from: http://www.healthscotland.com/documents/4877.aspx
  • Durand, M.-A., Carpenter, L., Dolan, H., Bravo, P., Mann, M., Bunn, F., & Elwyn, G. (2014). Do interventions designed to support shared decision-making reduce health inequalities? A systematic review and meta-analysis. PLoS ONE, 9(4), e94670. doi:10.1371/journal.pone.0094670
  • Easthall, C., & Barnett, N. (2017). Using theory to explore the determinants of medication adherence: Moving away from a one-size-fits-all approach. Pharmacy, 5(3), 50–58. doi:10.3390/pharmacy5030050
  • Fassihi, H. (2013). Spotlight on ‘xeroderma pigmentosum’. Photochemistry and Photobiology, 12, 7884. doi:10.1039/c2pp25267h
  • Graham, E. (2016). Improving outcomes through personalised medicine. NHS England, Medical Directorate. Medicines, Diagnostics and Personalised Medicine Unit. Publications Gateway Reference: 05784.
  • Hargraves, I., LeBlanc, A., Shah, N. D., & Montori, V. M. (2016). Shared decision making: The need for patient-clinician conversation, not just information. Health Affairs, 35(4), 627–629.
  • Harris, R. (2013). Getting unstuck in ACT: A clinician's guide to overcoming common obstacles in acceptance and Commitment Therapy. Oakland, CA: New Harbinger Publications.
  • Hawkins, R. P., Kreuter, M. W., Resnicow, K., Fishbein, M., & Dijkstra, A. (2008). Understanding tailoring in communicating about health. Health Education Research, 23(3), 454–466. doi:10.1093/her/cyn004
  • Holmes, E. A., Hughes, D. A., & Morisson, V. L. (2014). Predicting adherence to medications using health psychology theories: A systematic review of 20 years of empirical research. Value in Health, 17(8), 863–876. doi:1j.pec.2011.02.006/j.jval.2014.08.2671
  • Johnstone, L., & Dallos, R. (2014). Formulation in psychology and psychotherapy. East Sussex: Routlegde.
  • Krebs, P., Prochaska, J. O., & Rossi, J. S. (2010). Defining what works in tailoring: A meta-analysis of computer-tailored interventions for health behavior change. Preventive Medicine, 51(3-4), 214–221. doi:1j.pec.2011.02.006/j.ypmed.2010.06.004
  • Kreuter, M., Strecher, V. J., & Glassman, B. (1999). One size does not fit all: The case for tailoring print materials. Annals of Behavioral Medicine, 21(4), 276–283. doi:10.1007/BF02895958
  • Kreuter, M., & Wray, R. J. (2003). Tailored and targeted health communication: Strategies for enhancing information relevance. American Journal of Health Behavior, 27(Suppl 3.), S227–S232. doi:10.5993/AJHB.27.1.s3.6
  • Kunneman, M., Montori, V., Castaneda-Guarderas, A., & Hess, E. P. (2016). What is shared decision making? And What is it not. Academic Emergency Medicine, 23(12), 1320–1324. doi:10.1111/acem.13065
  • Lehmann, A. R., McGibbon, D., & Stefanini, M. (2011). Xeroderma pigmentosum. Orphanet Journal of Rare Diseases, 6, 70. doi:10.1186/1750-1172-6-70
  • Lustria, M. L. A., Noar, S. M., Cortese, J., Van Stee, S. K., Glueckauf, R. L., & Lee, J. (2013). A meta-analysis of web-delivered tailored health behavior change interventions. Journal of Health Communication, 18(9), 1039–1069. doi:10.1080/10810730.2013.768727
  • Michie, S., Richardson, M., Johnston, M., Abraham, C., Francis, J., Hardeman, W., … Wood, C. E. (2013). The Behavior change Technique Taxonomy (v1) of 93 hierarchically clustered techniques: Building an international consensus for the reporting of behavior change interventions. Annals of Behavioral Medicine, 46(1), 81–95. doi:10.1007/s12160-013-9486-6
  • Morgan, M., Anderson, R., Walburn, J., Weinman, J., & Sarkany, R. (2019). The influence of perceived medical risks and psychosocial concerns on photoprotection behaviours among adults with xeroderma pigmentosum: A qualitative interview study in the UK. BMJ Open, 9, e024445. doi:10.1136/bmjopen-2018-024445
  • National Research Council. (2011). Toward precision medicine: Building a knowledge network for biomedical research and a new taxonomy of disease. Washington, DC: The National Academies Press.
  • NHS England. (2018a). Service specification: DNA nucleotide excision repair disorders service (all ages). Retrieved from https://www.england.nhs.uk/publication/service-specification-dna-nucleotide-excision-repair-disorders-service-all-ages/
  • NHS England. (2018b). Highly specialised services. Retrieved from https://www.england.nhs.uk/commissioning/spec-services/highly-spec-services/
  • Nikcevic, A. V., Kuczmierczyk, A. R., & Bruch, M. (2006). Formulation and treatment in clinical health psychology. East Sussex: Routlegde.
  • Noar, S. M., Benac, C. N., & Harris, M. S. (2007). Does tailoring matter? Meta-analytic review of tailored print health behavior change interventions. Psychological Bulletin, 133(4), 673–693. doi:10.1037/0033-2909.133.4.673
  • Noar, S. M., Grant Harrington, N., Van Stee, S. K., & Shemanski Aldrich, R. (2011). Tailored health communication to change lifestyle behaviors. American Journal of Lifestyle Medicine, 5(2), 112–122. doi:10.1177/1559827610387255
  • Peters, G. J., Ruiter, R. A., & Kok, G. (2013). Threatening communication: A critical re-analysis and a revised meta-analytic test of fear appeal theory. Health Psychology Review, 7(Suppl 1), S8–S31. doi:10.1080/17437199.2012.703527
  • Petrie, K. J., Cameron, L. D., Ellis, C. J., Buick, D., & Weinman, J. (2002). Changing illness perceptions after myocardial infarction: An early intervention randomised controlled trial. Psychosomatic Medicine, 64(4), 580–586. doi:10.1097/00006842-200207000-00007
  • Petrie, K. J., Perry, K., Broadbent, E., & Weinman, J. (2012). A text message programme designed to modify patients’ illness and treatment beliefs improves self-reported adherence to asthma preventer medication. British Journal of Health Psychology, 17(1), 74–84. doi:10.1111/j.2044-8287.2011.02033.x
  • Petty, R. E., & Cacippo, J. T. (1986). The elaboration likelihood model of persuasion. Advances in Experimental Social Psychology, 19, 123–205. doi:10.1016/S0065-2601(08)60214-2
  • Rollnick, S., & Miller, W. R. (1995). What is motivational interviewing? Behavioural and Cognitive Psychotherapy, 23(4), 325–334. doi:10.1017/S135246580001643X
  • Sainsbury, K., Vieira, R., Walburn, J., Sniehotta, F. F., Sarkany, R., Weinman, J., & Araujo-Soares, V. (2018b). Understanding and predicting a complex behaviour using n-of-1 methods: Photoprotection in xeroderma pigmentosum. Health Psychology, 37(12), 1145–1158. doi:10.1037/hea0000673
  • Sainsbury, K., Walburn, J., Araujo-Soares, V., & Weinman, J. (2018a). Challenges and proposed solutions for formative research to inform systematic intervention development in rare and unstudied conditions: The case example of xeroderma pigmentosum. British Journal of Health Psychology, 23(2), 229–237. doi:10.1111/bjhp.12287
  • Shay, L. A., & Lafata, J. E. (2015). Where is the evidence? A systematic review of shared decision making and patient outcomes. Medical Decision Making, 35(1), 114–131. doi:10.1177/0272989X14551638
  • Tamura, D., DiGiovanna, J. J., Khan, S. G., & Kraemer, K. H. (2014). Living with xeroderma pigmentosum: Comprehensive photoprotection for highly photosensitive patients. Photodermatology, Photoimmunology and Photomedicine, 30(2-3), 146–152. doi:10.1111/phpp.12108
  • Vidall, C., Barlow, H., Crowe, M., Harrison, I., & Young, A. (2011). Clinical nurse specialists: Essential resource for an effective NHS. British Journal of Nursing, 20(17), S23–S27. doi:10.12968/bjon.2011.20.Sup10.S23
  • Walburn, J., Anderson, R., & Morgan, M. (2019c). Forms, interactions, and responses to social support: A qualitative study of support and adherence to photoprotection amongst patients with xeroderma pigmentosum. British Journal of Health Psychology, doi:10.1111/bjhp.12396
  • Walburn, J., Canfield, M., Norton, S., Sainsbury, K., Araujo-Soares, V., Foster, L., et al. (2019a). Psychological correlates of adherence to photoprotection in a rare disease: International survey of people with xeroderma pigmentosum. British Journal of Health Psychology, 24(3), 668–686. doi:10.1111/bjhp.12375
  • Walburn, J., Norton, S., Sarkany, R., Sainsbury, K., Araujo-Soares, V., Morgan, M., et al. (2019b). Evaluation of a personalised adherence intervention to improve photoprotection in adults with xeroderma pigmentosum (XP): Protocol for the trial of XPAND. BMJ Open, 9, e028577. doi:10.1136/bmjopen-2018-028577
  • Walburn, J., Sainsbury, K., Foster, L., Weinman, J., Morgan, M., Norton, S., Canfield, M., Chadwick, P., Sarkany, R., & Araujo-Soares, V. (2020). Why? What? How? Using an Intervention Mapping approach to develop a personalised intervention to improve adherence to photoprotection in patients with Xeroderma Pigmentosum. Health Psychology and Behavioral Medicine, 8(1), 475–500. https://doi.org/10.1080/21642850.2020.1819287
  • Wanyonyi, K. L., Themessl-Huber, M., Humphris, G., & Freeman, R. (2011). A systematic review and meta-analysis of face-to-face communication of tailored health messages: Implications for practice. Patient Education and Counseling, 85(3), 348–355. doi:10.1016/j.pec.2011.02.006