Optimization of home treatment in haemophilia: effects of transmural support by a haemophilia nurse on adherence and quality of life

Lock, Janske; Raat, Hein; Peters, Marjolein; Scholten, Marcoen F.; Beijlevelt, M.; Oostenbrink, Rianne; Leebeek, Frank W.G.; Moll, Henriëtte A.; Cnossen, Marjon H.

doi:10.1111/hae.13043

Cited by 12 publications

(30 citation statements)

References 56 publications

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“…17 However, the median adherence level from step 1 of our prophylaxis regimen of almost 93% was higher than has previously been reported. 10,11,[16][17][18][19][20][21][22][23][24][25][26][27][28] The reduced number of infusions, especially in the early years of prophylaxis, and the increased likelihood of infusions in a hospital setting may have contributed to increased adherence.…”

Section: Discussionmentioning

confidence: 99%

Hemophilia prophylaxis adherence and bleeding using a tailored, frequency‐escalated approach: The Canadian Hemophilia Primary Prophylaxis Study

Dover

Blanchette

Wrathall

et al. 2020

Research and Practice in Thrombosis and Haemostasis

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Background Standard of care for persons with severe hemophilia A includes regular replacement of factor VIII (FVIII). Prophylaxis regimens using standard half‐life (SHL) FVIII concentrates, while effective, are costly and require frequent intravenous infusions. Aim This study evaluated the adherence of 56 boys with severe hemophilia A to tailored, frequency‐escalated prophylaxis with an SHL recombinant FVIII concentrate. Methods We reviewed the factor infusion and bleeding logs of study subjects. Adherence to the prescribed regimen was calculated on a weekly basis, and bleeding rates were determined from self/proxy‐reported bleeding logs. The primary outcome was adherence to the prescribed prophylaxis regimen. Results The median (range of values [ROV]) weekly adherence to prophylaxis was 85.7% (37.4%‐99.8%). The median (ROV) adherent weeks on steps 1 (weekly), 2 (twice weekly), and 3 (alternate‐day) were 92.9% (50%‐100%), 80.3 (32%‐96%), and 72.6% (14%‐98%); relative to step 1, subjects were less likely to be adherent on steps 2 and 3 (P < 0.00). On step 1, our cohort had higher adherence than previously reported rates. The median (ROV) adherence to the breakthrough bleeding protocol was 47.1% (0%‐100%). At any given time, bleeding risk was reduced by 15% for each 10% increase in adherence during the preceding 12 weeks (hazard ratio, 0.85; 95% confidence interval, 0.81‐0.90). Conclusion This cohort had high rates of adherence to the prescribed prophylaxis regimen. Initiating prophylaxis with once‐weekly infusions facilitated adherence to the prophylaxis regimen in this cohort of boys with severe hemophilia A started on primary prophylaxis at a very young age.

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Section: Discussionmentioning

confidence: 99%

Hemophilia prophylaxis adherence and bleeding using a tailored, frequency‐escalated approach: The Canadian Hemophilia Primary Prophylaxis Study

Dover

Blanchette

Wrathall

et al. 2020

Research and Practice in Thrombosis and Haemostasis

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“…More than two thirds of studies (11/16) adopted a cross-sectional data collection including those with retrospective data from chart review, 29 , 30 , 32 , 33 , 35 , 36 , 39 , 40 , 42 whereas two were pre-post evaluations of interventions. 31 , 41 Two had prospective follow-up designs, 34 , 37 and one was a qualitative inquiry on the experience of treatment in adults. 38 …”

Section: Results: Prophylaxis Treatment In Hemophiliamentioning

confidence: 99%

“… 43 Five studies also used infusion logs or diaries. 31 , 34 , 36 – 38 Finally, five studies used an objective adherence index, computed from a ratio of units administered divided by units prescribed. 34 , 36 , 40 , 41 , 44 However, a wide variety of definitions of adherence was observed among these studies: a high adherence could refer to a perfect administration (no errors) 36 or to limited errors in infusing, dosing, or timing 34 or to the absence of consequent bleeding episodes.…”

Section: Results: Prophylaxis Treatment In Hemophiliamentioning

confidence: 99%

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Categorizing factors of adherence to parenteral treatment in growth hormone deficiencies and hemophilia: What should be the targets for future research?

Sultan¹,

Hourani²,

Rondeau³

et al. 2018

PPA

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Adherence to treatment regimens in growth hormone dysregulations and hemophilia is related to better outcome and fewer complications over time. Subcutaneous growth hormone injection and intravenous blood factor replacement therapies are parenteral treatments with a comparable regimen calling for similar behavioral processes. Although we have lists of possible factors influencing adherence in these conditions, the evidence is scattered. The objective of this study was to systematically review empirical studies linking factors of adherence with measures of adherence. To categorize the factors, we used a taxonomy from the diabetes literature. We used four major electronic databases to identify articles. We synthesized 27 articles dated 2011–2017 corresponding to inclusion criteria. Results showed a consistent proportion of 20%–25% participants with adherent issues. Strong arguments pointed to the transition to self-care in pediatrics as a vulnerability period (7/27 reports). We found the domains of individual factors (<30% reports), relational factors (<13%), health care (<30%), to be understudied in comparison with that of demographic or clinical context (>74%), and practical issues (>37%). The results suggest that future research should focus on modifiable factors of adherence, with appropriate measurement and intervention strategies. One central methodological limitation of reviewed reports was the lack of longitudinal designs, and the quasi absence of behavioral trial targeting modifiable factors of adherence. A new research agenda should be set in these rare diseases as higher adherence should translate into improved outcome and better quality of life for patients and their families.

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“…Problematyką wsparcia otrzymywanego od pielęgniarek przez rodziców dzieci chorych na hemofilię zajmowali się Lock i wsp. [21], którzy wykazali, iż wsparcie regularnie udzielane przez pielęgniarki opiekunom chorych dzieci przekłada się na znaczącą poprawę komunikacji i wzrost udzielanego sobie wzajemnie wsparcia przez rodziców, których dzieci przebywały w pediatrycznych ośrodkach leczenia hemofilii.…”

Section: Dyskusjaunclassified

Expected and received support from the medical personnel in the perception of parents of children treated in hospital

Mazur¹,

Aftyka²,

Sipta³

et al. 2016

psy

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Wstęp: W sytuacji choroby i hospitalizacji dziecka niezwykle istotne jest całościowe podejście zarówno do małego pacjenta, jak i jego opiekunów. Obejmuje ono nie tylko leczenie oraz pielęgnowanie chorego dziecka, lecz także udzielanie wsparcia jego rodzicom. Celem pracy były ocena wsparcia udzielanego rodzicom przez pielęgniarki i lekarzy oraz ocena wsparcia otrzymywanego i oczekiwanego od pielęgniarek w percepcji rodziców hospitalizowanych dzieci. Materiał i metody: Badaniami objęto 120 rodziców, których dzieci przebywały na Oddziale Chirurgii i Traumatologii Dziecięcej oraz na I i II Oddziale Ortopedii Dziecięcej Uniwersyteckiego Szpitala Dziecięcego w Lublinie. Zastosowanymi narzędziami badawczymi były Kwestionariusz NPST w polskiej adaptacji Anny Aftyki i wsp. oraz ankieta socjodemograficzna. Wyniki i wnioski: Rodzice hospitalizowanych dzieci uważają, że otrzymywali od pielęgniarek i lekarzy porównywalne wsparcie informacyjne, emocjonalne, wartościujące, instrumentalne oraz ogólne. W percepcji respondentów otrzymywane od pielęgniarek wsparcie informacyjne, emocjonalne, wartościujące, instrumentalne oraz ogólne jest niższe od oczekiwanego. Otrzymane wyniki badań własnych pogłębiają wiedzę w obszarze psychologii zdrowia oraz mogą być wykorzystane do opracowania skutecznych form udzielania wsparcia rodzicom hospitalizowanych dzieci przez personel medyczny.

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Optimization of home treatment in haemophilia: effects of transmural support by a haemophilia nurse on adherence and quality of life

Abstract: After a period of transmural care by a haemophilia nurse, significant but small positive effects were demonstrated with regard to communication and increase of perceived support between parents and haemophilia treatment centre. No improvement was observed in other outcome measures.

Cited by 12 publications

References 56 publications

Hemophilia prophylaxis adherence and bleeding using a tailored, frequency‐escalated approach: The Canadian Hemophilia Primary Prophylaxis Study

Hemophilia prophylaxis adherence and bleeding using a tailored, frequency‐escalated approach: The Canadian Hemophilia Primary Prophylaxis Study

Categorizing factors of adherence to parenteral treatment in growth hormone deficiencies and hemophilia: What should be the targets for future research?

Expected and received support from the medical personnel in the perception of parents of children treated in hospital

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