Research

Home therapy for inherited bleeding disorders in South Africa: Results of a modified Delphi consensus process

J N Mahlangu, Y Naidoo, Y Goga, M Vaithlingum, J Joubert, C Sutton, J Potgieter, A-L Cruickshank, A Iorio

Abstract


Background. Optimal care of patients with inherited bleeding disorders requires that bleeding episodes are treated early, or still better prevented, through extension of patient care beyond hospital-based treatment to home-based therapy. In South Africa (SA), adoption of home therapy is variable, in part owing to lack of consensus among healthcare providers on what constitutes home therapy, which patients should be candidates for it, how it should be monitored, and what the barriers to home therapy are.

Objectives. To conduct a modified Delphi process in order to establish consensus on home therapy among haemophilia healthcare providers in SA.

Methods. Treaters experienced in haemophilia care were invited to participate in a consensus-seeking process conducted in three rounds. In round 1, provisional statements around home therapy were formulated as questions and collated in a structured list. In rounds 2 and 3, evolving versions of the questionnaire were administered to participants. Consensus was defined as ≥70% agreement among the participants.

Results. The panel composition included an equal number of physicians and non-physicians. The participation rate was 100% through all three consensus rounds. The group reached consensus for 92% of the statements. Consensus of 100% was reached on starting home therapy in paediatric patients, requiring all patients on home therapy to sign informed consent and indemnity, and providing round-the-clock support for patients on home therapy.

Conclusions. The home therapy consensus statements in this report have the potential to translate to policy on home therapy and to guide the initiation, practice and evaluation of home therapy programmes in SA.

 


Authors' affiliations

J N Mahlangu, Haemophilia Comprehensive Centre, Charlotte Maxeke Academic Johannesburg Hospital, National Health Laboratory Service and University of the Witwatersrand, Johannesburg, South Africa

Y Naidoo, Lilly Haematology Centre, Midlands Medical Centre, KwaZulu-Natal, South Africa

Y Goga, Inkosi Albert Luthuli Central Hospital and Department of Paediatrics, Nelson Mandela School of Medicine, College of Health Sciences, University of KwaZulu-Natal, Durban, South Africa

M Vaithlingum, Netcare Parklands Hospital, Durban, South Africa

J Joubert, Division of Clinical Haematology, Faculty of Health Sciences, University of the Free State, Bloemfontein, South Africa

C Sutton, Department of Paediatrics, Faculty of Health Sciences, University of Limpopo, South Africa

J Potgieter, Steve Biko Academic Hospital and Department of Haematology, Faculty of Health Sciences, University of Pretoria and National Health Laboratory Service, South Africa

A-L Cruickshank, Groote Schuur Hospital and Department of Haematology, Faculty of Health Sciences, University of Cape Town, South Africa

A Iorio, Department of Health Research, Impact and Evidence and Department of Medicine, McMaster University, Hamilton, Ontario, Canada

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Keywords

Home therapy; Consensus; Haemophilia

Cite this article

South African Medical Journal 2019;109(9):639-644. DOI:10.7196/SAMJ.2019.v109i9.13637

Article History

Date submitted: 2019-08-28
Date published: 2019-08-28

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