ORIGINAL ARTICLE Clinical haemophilia

Social determinants and health-related dimensions ofquality of life in adult patients with haemophilia

R. DOLATKHAH,* A. FAKHARI,† M. Z. PEZESHKI,‡ R. SHABANLOUEI,* N. TAVASSOLI* and

M. GHOLCHIN§

*Hematology and Oncology Research Center, Tabriz University of Medical Sciences, Tabriz, Iran; †Clinical Psychiatry

Research Center, Tabriz University of Medical Sciences, Tabriz, Iran; ‡Department of Community Medicine, Program for

Estimation of Pretest Probability, Tabriz University of Medical Sciences, Tabriz, Iran; and §Hematology and Oncology

Research Center, Tabriz University of Medical Sciences, Tabriz, Iran

Summary. The availability of safe and effective factorreplacement therapies, in persons with haemophilia(PWH), has in some countries answered the basic needfor treatment of these patients. The findings suggest thatadult patients who have always been on prophylaxisreported significantly better physical functioning, andthus better quality of life. This study is designed toevaluate the QoL in adult PWH, by focusing on socialdeterminants of QoL and their relationship with health-related dimensions, in Tabriz, Iran. The surveyinstrument was a self-report 36 items questionnaire,‘A36 Hemofilia – QoL’, which is a disease-specificquestionnaire for the assessment of the health-relatedQoL in adults living with haemophilia. A total of 100haemophilia A and B patients, aged over 17 yearsparticipated in this study within 1 year. QoL total score

was 71.88 (�26.89 SD). Patients who treat in ourHemophilia Treatment Center, had better QoL score(P = 0.000), and education has a significant impact onthe social aspects of QoL (P = 0.18). The QoL was verypoor in urban area in contrast to patients who lived inthe city (54.45 vs. 74.21 respectively). Single patientshave a better QoL than married patients (76.56 vs.68.50 respectively). Our results showed that loweducation and lack of awareness of the diseases amongPWH lead to reduce of QoL and more diseasecomplications. More and wider treatment andpsychological care for improving quality of life of thesepatients are seriously recommended.

Keywords: health, haemophilia A, haemophilia B, qualityof life

Introduction

Haemophilia is a genetic haemorrhagic disorder, andin terms of prevalence, Iran ranks second in the Mid-dle East [1–3]. Although modern treatment methodshave succeeded in increasing survival rates [4–6], thesepatients still suffer complications due to haemorrhage.These haemorrhages mainly occur in the joints, oftencausing arthropathy, severe joint pain, stiffness andreduced range of motions [7,8].These clinical presentations, not only negatively affect

physical functioning of haemophiliacs, but they alsothreaten psychological and physical well-being and

social functioning of the patient. These factors can alsohave a destructive effect on patients’ quality of life [9].Health-related quality of life (HRQoL) is a varying

and dynamic structure, which is conducted to deter-mine a wide range of psychological, physical, socialand functional dimensions. Thus, its measurement canmean visualization of severity of symptoms of the dis-ease or its treatment complications, assessing percep-tion and experience of patients and manifestation ofthese in their daily lives [10,11].Measurement of quality of life in haemophilic

patients is important in terms of both clinical deci-sions, and reported consequences by patients [12]. Theinconsistent and ever-at risk state of haemophiliacscause perceived inability, despair and persistent worry-ing about the future. These patients are forced to makethemselves compatible with a variety of constraints(physical, occupational, educational and financial).Hence, perhaps, the feeling of needing support, andlack of support from the community, could generatefrustration and sometimes even suppressed violence

Correspondence: Ali Fakhari, Clinical Psychiatry Research Cen-ter, Tabriz University of Medical Sciences, Razi Educational and

Treatment Center, Elgholi Road, PO Box: 51575 Tabriz, Iran.

Tel./fax: +98 411 3804486;e-mail: a_fakhari@yahoo.com

Accepted after revision 19 October 2013

376 © 2013 John Wiley & Sons Ltd

Haemophilia (2014), 20, 376–381 DOI: 10.1111/hae.12321

towards the community. The families of these patientsoften suffer from the disease themselves, or have hadto suffer with the patient, and shoulder the burden ofexpenses, pains and disabilities of the patient. Con-cern, fear and despair about the future of the patientare always evident in their behaviour and feelings.The studies conducted in Iran reveal that haemophilic

patients are always involved in neurological and psychi-atric disorders such as depression, anxiety, paranoidideation, etc. These conditions have had a significantimpact on their quality of life [13]. However, which ofthe aspects of quality of life is affected in these patientsis not clear. Thus, with specialized tools, researchershave studied quality of life of adult haemophiliac, todetermine the level of quality of life in haemophiliacsover 17 years of age, and also to specify which aspectsare mostly affected, so that, necessary decisions can betaken for improvement of various aspects of quality oflife, thereby, reducing sufferings in these patients.

Objectives

The aim of this study was to assess quality of life inpatients with haemophilia attending haemophiliaclinic at Shahid Ghazi-Tabatabaei in Tabriz over thepast year.Considering the existing experiences in facing hae-

mophiliacs at this clinic in Tabriz, and on the basis ofprevious studies, the researcher discovered a variety ofneurological disorders in these patients, includingdepression, anxiety, paranoid ideation, etc. Therefore,it is necessary to pay special attention to these patientsand consider all aspects of their lives, and to improvequality of their lives, necessary procedures must betaught, to prevent incidence of psychological, socialand economic risk factors, or to reduce them.Because a total of 100 patients with haemophilia

regularly attend this centre, all were included in thestudy. Study subjects were selected from availablepatients attending Shahid Ghazi-Tabatabaei Clinic.Demographic details in the form of standard ques-

tionnaires, A36 Hemofilia-QoL questionnaire werecompleted and collected for the patients group.Patients’ information was categorized and analysedaccording to type and severity of the disease, type oftreatment, age, marital status, level of education, placeof residence and satisfaction with income. All ethicalissues were met, and the study was approved by theinstitute ethical committee of the Tabriz University ofMedical Sciences. All of the patients filled the patientconsent form. Also patients were assured of anony-mity that their responses would be confidential.

Stages of study

This was a descriptive, sectional study conducted over1 year (March 2011–March 2012). A total of 100

haemophilic patients were surveyed according to avail-ability and in order of attendance at the haemophiliaclinic.Quality of life questionnaires, A36 Hemofilia-QoL

were completed by the patients, and were collected.Patients’ details were categorized and analysed accord-ing to type and severity of disease, type of treatment,marital status, level of education, place of residenceand satisfaction with income. All patients were in17 years plus age range. Lack of intention to partici-pate, illiteracy and chronic medical complicationswere study exclusion criteria.

Design and methodology

The study group included 100 patients with one typeof haemophilia with any severity (severe, moderateand mild), confirmatory tests including one-stage FVIIIand FIX assay have been performed using STA (Stan-dards and Testing Agency) Deficient FVIII and FIX,an immune-depleted plasma intended in plasma byanalysers of the STA line suitable with these reagents(Diagnostica Stago, France) in haematology lab of thecentre. They were surveyed using the Disease-specificquestionnaire for the assessment of the health-relatedquality of life adults living with haemophilia, A36Hemofilia-QoL questionnaire [11,14]. All patientswere adults (over 17 years of age) undergoing treat-ment with coagulation factors.This questionnaire is specific to adult haemophiliacs,

translated into Persian (available in: http://www.pro-qolid.org/). The questionnaire contains 36 four-optionquestions, with response options of 5-point Likertscale, self assessment and is directly associated withcomplications of the disease and its treatment titled‘Difficulties with Treatment’. For completion of thequestionnaire, 10–15 min time was allocated for eachpatient. This questionnaire was a multi-purpose tool,evaluating the following criteria in patients. The crite-ria in the questionnaire were patients’ problem-specificand included Physical health, Daily activities, JointDamage, Pain, Treatment Difficulties, Treatment satis-faction and Relationships and Social activities. QoLscore indicated quality of life of patients, and higherscores showed better quality of life in patients. More-over, the score obtained was expressed as a percentageof QoL overall score, and evaluated accordingly, withclassification in four groups: 1 = good (>75% of max-imum score acquired), 2 = moderate to good (50–75% of maximum score acquired), 3 = poor to mod-erate (25–50% of maximum score acquired), 4 = poor(<25% of maximum score acquired) [15].Table 1 shows how score the subscales in the ques-

tionnaire. For scoring, manually indicated itemsshould be summed across subscale (18, 19, 22, 28have been reversed). For the global score all itemswere taken into account.

© 2013 John Wiley & Sons Ltd Haemophilia (2014), 20, 376--381

QUALITY OF LIFE IN HAEMOPHILIA 377

Given that in this study no particular interventionin terms of treatment was applied, and patients weresurveyed on their quality of life, patients had declaredtheir consent for taking part in the survey prior tobeginning of the questioning.Chi-squared or Fisher’s exact test were used for

demographic data, and for the descriptive data, per-centage and central indices (mean, median, and mode)were used. To compare quality of life of haemophil-iac’s t-test, and for correlation, Pearson’s tests wereused.

Results

In total, 100 patients with types A and B haemophiliawere studied. The QoL score showed quality of life inpatients, with higher score indicating better quality oflife. Mean score of QoL in all patients was 71.88(�26.89 SD), which according to the above classifica-tion, it is in the average to weak group. Patients’ ageranged 17–70 years, with mean 32.16 (�11.68 SD)years. The correlation between patients’ age and QoLscore was insignificant (P = 0.937).Among 100 haemophilic patients, 83 were with type

A haemophilia and 17 with type B haemophilia. Meanscore of QoL in type A patients was 71.7 � (27.56SD), and in type B patients it was 72.75 (�24.17).The QoL score showed no significant correlation withtype of haemophilia, which was to be fully expected.No significant difference was found in quality of lifebetween the two groups of patients (P = 0.554).The one-way ANOVA test was used to compare mean

and standard deviation in mild, moderate and severegroups of patients. Then, mean and standard devia-tions were compared two by two. In 100 patients, 17were mild, 36 moderate and 46 severe. Mean QoLscore in each group was in the mild group 104.53(�15.44 SD), in moderate group 68.54 (�26.66 SD),

and in the severe group mean QoL score was 64.31(�22.66 SD). Spearman test showed that there was asignificant correlation between severity of disease andquality of life (q = 0.351, P = 0.01). Furthermore,using post hoc test, QoL level was compared two bytwo in the three groups. There was a significant differ-ence between severity of disease and QoL level in twogroups of mild and severe (P < 0.01) and in twogroups of mild and moderate (P = 0.01). But, no sig-nificant difference was found in severe and moderategroups in terms of mean quality of life (P = 0.708).Level of education of patients was analysed accord-

ing to number of years of education. Frequency oflevel of education in patients was 10.56 (�0.46 SD)years. Pearson’s test revealed no significant correlationbetween the number of education years and quality oflife in patients (P = 0.053), and a weak correlationcoefficient was found for these two (r = 0.202). How-ever, QoL score increased with increasing educationyears, indicating better quality of life.In terms of place of residence, 88 patients lived in

urban areas and 12 in rural. Mean overall score ofquality of life in two urban and rural groups were74.21 (�26.84 SD) and 54.45 (�20.9 SD), respec-tively. The Tukey-LSD test showed that mean qualityof life was significantly lower in patients in rural areascompared to urban patients (P = 0.013), and qualityof life was very low in rural population.In terms of place of treatment, 35 patients were

treated only at clinic, 41 were treated only at homeand 24 patients were treated both at home and at theclinic. The one-way ANOVA test was used to examinethe correlation between QoL and place of treatment.Mean QoL score in patients treated only in clinic (thefirst group) was 90.7 (�23.36 SD), in patients thatwere treated only at home (the second group) it was66.25 (�22.64 SD) and in patients that were treatedboth at home and at clinic (the third group) it was55.59 (�23.95 SD). The study showed that patientsthat were treated only at the clinic had better qualityof life compared to the other two groups (P = 0.000).Of all the patients, 42 were single and 58 were mar-

ried. Mean QoL score in the singles group was 76.56(�28.59 SD) and in the married group 68.5 (�25.32SD). According to these scores, quality of life was bet-ter in single patients, but the difference between thetwo groups was insignificant (P = 0.155).In terms of satisfaction with income, of all the

patients, 43 were unhappy with their income level (nosatisfaction group), 21 were somewhat happy (some-how group), 12 were satisfied with their income, 17were without income and 7 did not answer this ques-tion (could be due to lack of income for being stu-dents). Mean scores of QoL for the groups are shownin Table 2. As expected, quality of life in these groupswas proportional to their level of satisfaction withincome, and with increased satisfaction with level of

Table 1. Subscales, items included in each domain, number of items, row

score possible.

Subscales (domains)

Items in the

questionnaire

Number

of items

Row score

Min–Max

possible

Physical health 1, 2, 3, 4, 5, 6, 7, 8 8 0–32Daily activities 9, 10, 11, 12 4 0–16Joint damage 13, 14, 15 3 0–12Pain 16, 17 2 0–8Treatment satisfaction 18*, 19* 2 0–8Treatment difficulties 20, 21, 22*, 23 4 0–16Emotional functioning 24, 25, 26, 27, 28* 5 0–20Mental health 29, 30, 31 3 0–12Relationships and

social activity

32, 33, 34, 35, 36 5 0–20

A36 Hemofilia-QoL

total score

(overall HRQoL)

All items 36 0–144

*These items have been reversed in the following way 0 = 4, 1 = 3,

2 = 2, 3 = 1 and 4 = 0.

Haemophilia (2014), 20, 376--381 © 2013 John Wiley & Sons Ltd

378 R. DOLATKHAH et al.

income, quality of life would improve. This differencewas statistically significant (P = 0.017). Using Tukey-LSD test, these groups were compared two by twoand the results are presented in Table 2. The patientswho did not answer to this question were not includedin the statistical analyses.The QoL score for patients was 71.88 (�26.89 SD),

which is in the moderate to poor group. According tothe results obtained in each subscale associated withdefined domains, patients were examined separately(Table 3), and in terms of physical health (51.15%),treatment satisfaction (67.37%), and in treatment dif-ficulties (60.62%) patients were in moderate to goodrange, and in other domains, patients were in moder-ate to poor range and included in Table 3.Also all of the nine subscales were evaluated and

compared in mild, moderate and severe HA and HBpatients. Results showed that there was no significantdifference between groups and within groups in Physi-cal health (PH) (P < 0.01), Daily activities (DA)(P < 0.01), Joint damage (JD) (P < 0.01), Pain (P)(P < 0.01), Emotional functioning (EF) (P < 0.01),Mental health (MH) (P < 0.01), Relationships and

social activity (RS) (P < 0.01). But in the Treatmentsatisfaction (TS) (P = 0.429) and Treatment difficulties(TD) (P = 0.077) the differences between groups andwithin groups there are significantly differences(Fig. 1).

Discussion

The World Health Organization’s definition of healthis ‘a state of complete physical, mental and socialwell-being and not merely the absence of disease orinfirmity’ [16]. Quality of life is a general criterion, bywhich the effect of different aspects of life on generalwell-being is assessed. As QoL includes evaluation ofnon-health-related criteria, it is clear that design anduse of QoL criteria that are related to health(HRQoL), for investigating medical treatment effectsis necessary [12,14].Health-related QoL means evaluation of effects of

disease and treatment parallel to domains of physical,psychological and social functioning in relation topeople’s health [6]. In addition, it is only the patientthat is able to describe his own attitude and experience

Table 2. Income satisfaction criteria among haemophilia patients.

Income satisfaction Number Mean QoL scores (�SD) Percentage of QoL scores (%) Tukey-LSD P value

No satisfaction 43 62.65 (�24.97) 43.50 Without Income 0.039

Somehow 0.024

Satisfied 0.010

Somehow 21 78.38 (�28.92) 54.43 Without income 0.975

No satisfaction 0.024

Satisfied 0.497

Satisfied 12 84.75 (�19.61) 58.85 Without income 0.497

No satisfaction 0.010

Somehow 0.497

Without income 17 78.11 (�27.59) 54.24 No satisfaction 0.039

Somehow 0.975

Satisfied 0.497

No answer 7 – – – –

Table 3. Subscales and domains’ scores of QoL among patient with

haemophilia.

Subscales (domains)

Mean score

(�SD) Percentage Range of QoL

Physical health (PH) 16.37 (�6.60) 51.15 Moderate to good

Daily activities (DA) 7.20 (�4.11) 45 Moderate to poor

Joint damage (JD) 5.52 (�2.94) 46 Moderate to poor

Pain (P) 3.50 (�1.89) 43.75 Moderate to poor

Treatment

satisfaction (TS)

5.39 (�1.76) 67.37 Moderate to good

Treatment

difficulties (TD)

9.70 (�3.38) 60.62 Moderate to good

Emotional

functioning (EF)

9.26 (�5.00) 46.3 Moderate to poor

Mental health (MH) 5.81 (�3.44) 48.41 Moderate to poor

Relationships and

social activity (RS)

9.58 (�5.55) 47.9 Moderate to poor

A36 Hemofilia-QoL

total score (overall

HRQoL)

71.88 (�26.89) 49.91 Moderate to poor

Fig. 1. The subscale scores of QoL in different severity of patient with

haemophilia.

© 2013 John Wiley & Sons Ltd Haemophilia (2014), 20, 376--381

QUALITY OF LIFE IN HAEMOPHILIA 379

of disease, without intervention by the doctor or any-one else [11,17,18].The most prevalent dimensions of HRQoL evalua-

tion include physical health, physical pain, emotionalor affective functioning, social functioning and psy-chological health. Some researchers consider the threephysical, psychological and social domains as the mostimportant for these evaluations (MOS-SF-36). Manystudies have been conducted on quality of life in hae-mophilia patients, and mostly these have used generalQoL criteria. After review of several studies and manytools used in these studies such as EQ-SD and SF36Haemo-QoL [19], eventually A36-Hemofilia-QoLquestionnaire for patients over 17 years of age wasdesigned, and as most patients were aged 17 yearsand over, this questionnaire with 36 questions waschosen for this study [10,11,14,20].Specific and excellent parameters of this tool with

nine domains in Hemofilia-QoL can successfully mea-sure and evaluate quality of life in these patients. Ina study by Remor et al. in 2005 in 10 health centresin Spain on 121 adult patients, mean QoL total scorewas 99 (�26.7 SD) with a range of 28–138 [11].The Iranian version of this questionnaire is availablefrom www.proqolid.org, which has been translatedfrom original language (Spanish), but we could notfind any evidence of psychometric properties such asreliability and validity in Iran, so this is one of thelimitations of this study, and further studies areneeded.Lumping haemophilia A and B patients together

and listing their disease severity as one group is inher-ently misleading and methodologically inaccurate. Sothis is one of limitations of this cross-sectionalresearch.According to the results obtained in this study,

patients who lived in rural areas had worse quality oflife, naturally, because of the distance, and the need tocommute, expenses, unemployment working andmany other reasons. The findings of this study alsoshowed that satisfaction with income can have animportant role in patients’ quality of life, and a signifi-cant difference was found between quality of life andlevel of income. Lack of income in some patients wasprobably due to being a student and not yet earningor perhaps due to the interaction conditions in adoles-cence, thus this needs to be studied further.The findings suggest that adult patients who have

always been on prophylaxis, reported significantly bet-ter physical functioning, and so better quality of life[1], whereas haemophilic patients in our centre stillreceive on-demand treatment, and often less than thestandard dosage required in each bleeding episodes.So their quality of life is moderate to poor for Emo-tional functioning, Daily activities and Joint damage.In terms of place of treatment, the results showed thatpatients who were treated in our Hemophilia Treat-

ment Center (HTC) significantly had better QoL. Thismay result from better, sufficient and correct treat-ment of health care team. So planning on treatmenteducational programmes about attitude and percep-tion of patients about their diseases can induce thequality of life in any HTC.Also findings showed that QoL total score increased

with increasing education years, so helping thepatients in this area for raising their educational levelsmay lead to better quality of life.Generally, the results showed that in terms of treat-

ment satisfaction, physical health and treatment diffi-culties, patients were in a reasonable condition.However, more and wider treatment and psychologi-cal care for improving quality of life of these patientsare seriously recommended [13].

Conclusion

According to the findings of this study, it can be con-cluded that this quality of life measuring tool, A36Hemofilia-QoL questionnaire, has many advantages.First, this questionnaire is designed according to theperception of the patient and the treatment team, andnot on the criteria acquired by the researcher or inarticles. Second, A36 Hemofilia-QoL is a short andsimple questionnaire that can be completed by thepatients, and it is very easy in terms of number ofquestions and scoring. Also, clinicians and haematolo-gists do not require any specific psychometric training.Finally, health care givers and haemophilia treat-

ment teams can encourage haemophilic patients toincrease their education, attitude, perception abouttheir disease and counselling and increased monitoringand support of patients could improve adherence toperfect treatment and thus well-being and quality oflife of haemophiliacs [1].

Acknowledgements

This study was supported by the Hematology and Oncology Research

Center of Tabriz University of Medical Sciences, as an approved Research

Project. The authors also thank all the patients who participated in this

study.

Author contributions

Roya Dolatkhah performed the research and wrote the paper. Ali Fakhari

wrote and edited the paper. Mohammad Zakaria Pezeshki designed the

research study, analysed data and contributed essential reagents or tools.

Reza Shabanloui contributed in writing the paper. Nasrin Tavasoli com-

pleted data and forms. Mehri Gholchin contributed to editing the paper.

Disclosures

The authors stated that they had no interests which might be perceived as

posing a conflict or bias.

Haemophilia (2014), 20, 376--381 © 2013 John Wiley & Sons Ltd

380 R. DOLATKHAH et al.

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