Background Information regarding menstrual difficulties for adolescents with developmental disabilities and their families is limited.
Aim To assess the impact of menstruation on adolescents with developmental disabilities and their families, and to compare this to previously reported experiences of age-matched normal girls.
Methods Families of girls aged 12–18 years with known disabilities, attending the Royal Children's Hospital, Melbourne, were recruited into a questionnaire based study evaluating issues of menstruation and associated problems, together with the consequent psychological, social and emotional impact on their families and carers. Information was sought regarding menstrual management strategies, outcome satisfaction and specific areas of family concern.
Results 103 questionnaires were completed. The average age of participating girls was 15.11 years, mean menarchal age 12.3 years. 79 girls were postmenarchal. The severity of menstrual problems was similar to a normal population. 59 (76%) were happy with the impact of menses on their social activities. More than 50% sought menstrual advice before menarche. Advice seeking strongly correlated with disability severity (p=0.01) and impact of menses on social activities (p=0.01), which in turn were highly predictive of seeking assistance (p=0.005). Carer satisfaction with current management inversely correlated with treatment seeking behaviour (p=0.034).
Conclusions Menstrual characteristics in this population are similar to those without disabilities. There is a high level of parental anxiety regarding the impact of menses, particularly when disability is severe. Medical therapies may be required but information for families is lacking. Clinicians should play a proactive and educational role with families and adolescents with disabilities.
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Information regarding menstrual difficulties that may be experienced by adolescents with developmental disabilities and their families is limited. A small number of reports, spanning nearly 40 years, have relied upon retrospective chart review,1 previous publication summary and review,2,–,4 questionnaire evaluation of adult women with disabilities5 6 and problems of understanding and consent.7,–,9 Recent comprehensive reviews of menstruation management for adolescents who have developmental disabilities have focused on detailed management strategies, treatment dilemmas associated with the use of hormonal preparations and social management of hygiene and mood issues.3 4 10
What is already known on this topic
▶. Menstrual disturbance is common in girls who have disabilities and is similar to that of a normal population.
▶. Detailed menstrual management strategies and treatment dilemmas associated with the use of hormonal preparations have been reported.
▶. Medical co-morbidities in this group increase management planning difficulties.
What this study adds
▶. This study reveals a strong relationship between severity of disability and the care seeking behaviours of families.
▶. It identifies a lack of knowledge of possible interventions for menstrual control in this group, indicating a major need for education and information for families.
Studies suggest that the onset of and progression through puberty for girls who have disabilities is very similar to the process experienced by a normal population of girls, with slightly earlier pubertal onset but later menarche reported in white girls who have cerebral palsy11 and slightly later menarche in the presence of autism.12 Various medical co-morbidities and the use of medications common to this group can cause menstrual irregularity. In particular, the use of anticonvulsants is associated with an increased rate of clearance of oestrogen via induction of the cytochrome P450 hepatic microsome oxidative enzyme system,13 and the use of antipsychotic agents can cause hyperprolactinaemia14 with consequent menstrual disturbance.
Concerns regarding menses in adolescents with developmental disabilities can be considered in three major categories: menstrual hygiene, premenstrual disorders and contraception.15 Menstrual hygiene problems, when secondary to behaviour issues related to pad usage or physical changing requirements by carers, are common concerns for affected families.1 15 16 Difficulty interpreting mood fluctuations, discomfort and other menstrual-associated symptoms occurs, due to impairments in communication with the affected girl, compounding parental concerns regarding menstrual hygiene. When puberty is early, parental grief for loss of childhood can colour perceptions. Considerations regarding the need for contraception, risks of sexual abuse and risks of sexually transmitted infections further impact on decision making and planning for care.15 16 Careful evaluation of the underlying reasons for particular requests should be undertaken, prior to choosing a particular mode of intervention.4 10
Several medical options for menstrual management, when required, are available. Each of these presents their own set of advantages and disadvantages, which must be considered in light of each individual's needs and medical history.3 4 9 A recent comprehensive review has provided detailed data concerning available options for menstrual management.4 While surgical options also exist, they are rarely necessary.17 Extended or continuous regimens of the combined contraceptive pill are commonly considered.18,–,20 In a population where chronically reduced mobility and wheelchair use is common, this may be associated with increased embolic risk.21,–,24 The levonorgestrel intrauterine system provides excellent contraception for 5 years with very low reported risks of expulsion, uterine perforation, infection or transient irregular bleeding and progesterone related side effects.25,–,27 Use of this device may potentially be limited by the need for general anaesthetic for insertion in this patient population. Depot medroxyprogesterone acetate use by adolescents has been associated with a reduction in bone mineral density.28,–,32 Bone health is a significant issue in young women with disabilities as they frequently have a number of causes of potential compromise.33 Reduced weight bearing exercise due to either limited mobility or wheelchair dependence, poor vitamin D levels as a result of limited sunlight exposure,34 as well as medication effects (in particular anticonvulsants) and poor calcium intake related to feeding difficulties, may all contribute. Adequate calcium and vitamin D intake must therefore be ensured, and oestrogen replacement may be considered. Progestogen therapies, be they oral, intramuscular injection or implantable device, may also be associated with irregular bleeding and weight gain. While all of these options are available to most affected young women, decision making as to the appropriateness and type of intervention for any given individual is an issue fraught with potential difficulties and sensitivities. Guidelines for the management of these girls are few. We therefore aimed to assess the impact of menstrual disorders on this group of adolescents and their families, to try to provide further information to guide practitioners.
Menstrual problems can also cause or contribute to ongoing iron deficiency and may be responsible for severe anaemia. In areas where iron deficiency is common, such as developing countries, particularly when a vegetarian diet is common, menorrhagia or polymenorrhoea can tip the balance. This can have a significant adverse effect on general health and wellbeing, even to the extent of presentation with cardiac failure due to severe anaemia. This must also be considered where nutritional intake is compromised, as may be the case in some individuals with developmental disabilities.35
The goal of this study was to assess the impact of menstruation on the lives of adolescents with developmental disabilities and their families, and to compare this to the previously reported experiences of age-matched normal girls.
Families of girls with known disabilities attending the Royal Children's Hospital (RCH), Melbourne, were invited by mail to participate in a questionnaire based study evaluating issues of menstruation and its associated problems, together with the consequent psychological, social and emotional impact on families and carers. To contact families we utilised the RCH database for children and adolescents with cerebral palsy, and selected all girls between the ages of 12 and 18 years. If families agreed to participate, they indicated a preference for a telephone interview or to complete the questionnaire by mail. A formal letter of information, together with a consent form was sent to all families, along with the questionnaires. All families who elected to complete the questionnaire via telephone were contacted by the same author (MZ) to ensure consistency in questioning and documentation.
The questionnaire sought information pertaining to the presence of and details regarding menstruation, any perceived problems for the girl or her carers and approaches to management and problems encountered. If the girl was using a form of menstrual management, the carer was contacted directly by telephone by the same author (MZ) to obtain details regarding her menses and related problems both before and after menstrual management was instigated. The questionnaire utilised items from validated questionnaires that have been used in other studies regarding menstrual problems.36 37 Information on the financial income of the family was collected to help define specific areas of stress or concern for families.
An overall category for severity of menses was compiled using reported scores for regularity of menses (yes=0, no=1), days of flow (≤7=0, >7=1), heaviness of flow (light=0, moderate=1, heavy and very heavy=2), associated symptoms (nausea, vomiting, headache, bloating, diarrhoea, low backache and indigestion/heartburn; each symptom=1) and pain with menses (none=0, slight=1, moderate=2, severe and very severe=3). The total possible menstrual severity score was tabulated for each patient and ranged from 0 to 14. The severity of menses was then classified as mild (0–3), moderate (4–8) or severe (9–14).
The degree of impact of menses on participation in social activities was scored as none, mild, moderate and severe based on the frequency of reported absence from school, social activities and physical activities.
The degree of disability for each individual was also classified depending on the number of activities of daily living (dressing, feeding, washing, toileting and menstrual care) for which assistance was required (mild=0–1, moderate=2–3, severe=4–5).
Correlation analyses were then performed to determine if any of these issues could predict the need for menstrual management, as identified by those families who had sought medical care, those who were currently using various menstrual suppression methods, or those who identified themselves as being unhappy with their current situation. A correlation was also sought between the current financial status of families, based on the parents' gross combined monthly income, and the likelihood of having sought medical care or of currently using a form of menstrual management. Statistical comparisons were made between binominal data using χ2 analyses.
Overall, 259 families whose daughters were aged between 12 and 18 years and who were registered with the RCH, Melbourne cerebral palsy database, were invited to participate in the study. Of these, 119 returned responses, with four declining and 115 requesting the questionnaire be sent or telephoned. In total, 103 questionnaires were completed. The average age of the girls who participated in the questionnaire was 15.11 years. The questionnaires were completed by the adolescent girls' care providers, with 93% completed by their mothers, 4% by their fathers and 2% by carers. The remaining 12 families did not return the questionnaires despite follow-up telephone reminders.
Degree of disability
Although cerebral palsy is the diagnosis in common for this group of young women, their degree of disability, as assessed by their need for assistance with basic activities of daily living, varied widely. One questionnaire reply did not supply information regarding level of care, while 42 of the remaining 102 adolescents were found to have mild disabilities, 12 moderate disabilities and 48 severe disabilities.
Twenty four girls were premenarchal at the time of the survey and therefore could not complete specific questions relating to their menses. The average recorded age at menarche was 12.33 years, ranging from 9 to 16 years. Menstrual characteristics are summarised in table 1.
Fifty four of the 79 (68.4%) menstruating adolescents described their menstrual cycles as regular, with cycles ranging from 21 to 35 days. Twelve girls (15%) had cycle lengths of less than 21 days, and 13 (16.5%) of greater than 35 days. Seventy five per cent of girls had menstrual flow lasting for 3–7 days, 8% for less than 3 days and 19% for more than 10 days. The heaviness of menstrual flow was described as light by 10 girls (13%), moderate by 37 (47%) and heavy or very heavy by 32 (41%).
Pain associated with menses was described as none or mild by 56% of respondents, moderate by 19% and severe by 18%. Seven responders indicated that they were unsure about the degree of pain experienced. Thirty seven (47%) of the adolescent girls had used some form of pain medication for their menses, and 26 (33%) continued to do so.
Other symptoms associated with menses included nausea, vomiting, headache, bloating, diarrhoea, lower backache, indigestion/heartburn and unsure. Bloating was the most frequent associated symptom, found in 41% of the adolescents.
The severity of menses category for each individual, as outlined above, was 23 mild, 49 moderate and 7 severe.
Impact on social function
Fifty seven (72%) of the 79 postmenarchal adolescents found menses had no impact on their participation in school, social or physical activities, while 46 were unable to participate in at least one of these activities during their menses.
Of the 79 adolescents who were postmenarchal, 19 (25%) were using a form of menstrual management other than pain medication: contraceptive pill (n=12), depo-medroxyprogesterone acetate (n=1), levonorgestrel intrauterine system (n=5) and etonogestrel implant (n=1). The degree of impact of menses on participation in social activities was highly predictive of the use of menstrual management options (p=0.005). Prior to menstrual management, 79% had heavy menses, whereas after management only 5% reported this and 47% were amenorrhoeic. A detailed comparison of the menstrual characteristics before and after menstrual management is shown in table 2.
Degree of parental concern
Fifty nine (76%) of the 78 families with a postmenarchal adolescent described themselves as being happy with the current management of their daughter's menses, while 10 families (13%) were unhappy, and nine were unsure. One family did not answer this question. No significant correlation was found between the happiness of parents with current management and the impact of the menses of their child's participation in social activities (p=0.574) or their child's level of disability (p=0.069). There was, however, an inverse relationship between the caretaker being happy with the current management of the menses and the severity of the menses (p=0.034).
Over 50% of the families (53/103) surveyed had sought medical advice regarding menstrual management for their teens, with 51% of them doing so prior to the onset of menarche. Both the severity of the child's disability (p=0.001) and the level of impact that menstruation had on their participation in activities (p=0.01) were significantly correlated with the likelihood that the families had sought medical advice.
Sources of information regarding menstrual management varied, with the most commonly reported being general practitioners (24%), hospital doctors (developmental disability services) (20%) and friends (15%). Other sources included school, books and magazines, own experience, relatives, endocrinologists, gynaecologists and the internet.
Gross combined parental income
Parental income was not found to correlate significantly with the likelihood of having sought care (p=0.069) or the use of menstrual management options (p=0.23).
The onset of puberty and menarche in a child can be particularly stressful for families with adolescents who have disabilities. Their burden of care may be markedly increased by this added responsibility.1 38 The anxiety provoked by menarche is highlighted by our finding that 50% of families sought medical care regarding menstrual management, with 51% doing so even before the onset of menses.
Age at onset and rate of progression through puberty has, at times, been altered by the presence of developmental disabilities.11 12 We found an average age of menarche in this population of girls with cerebral palsy of 12.33 years, similar to that quoted for normal school-aged girls.36 39 40
The prevalence and intensity of menstrual problems for girls with cerebral palsy compared to those of normal girls is shown in table 1. The frequency of irregular menses, perceived menorrhagia and dysmenorrhoea were not significantly different in this population with disabilities. Likewise, the use of pain medications was similar in the two populations. The most frequently reported associated symptoms in both populations were headache, bloating and lower backache. The frequency of reporting of any menstrual associated symptom, however, was substantially lower in our population. This is likely to be a result of limitations in verbalisation by disabled adolescents and interpretation by their caretaker.
Physical disability and need for assistance with activities of daily living such as washing, dressing, feeding, toileting and menstrual care, was strongly correlated with families having sought advice regarding menstrual management. Our data suggest that menstruation in adolescents with severe disability causes more personal and social distress to their families than menstruation in adolescents with cerebral palsy who have lower care requirements. This may be related to a number of factors, including the problems perceived or experienced by families who have additional external carers dealing with menses, limited availability for respite at times of menstruation and an increased reliance on the mother for provision of care. This would be particularly problematic in countries where all care falls to the immediate female family members.
Despite the high level of concern regarding menstrual management, especially prior to the onset of menses, relatively few families require medical intervention and 75% of families report being happy with the current status of their daughter's menses. For the majority of families, reassurance and education using a multi-disciplinary approach is all that is required.1 15 A number of therapies were employed for the 19 girls in this study who were currently using menstrual management: contraceptive pill, depo-medroxyprogesterone acetate, levonorgestrel intrauterine system and etonogestrel implant. Given the small number of these individuals, statistical analyses were not appropriate, although a noteworthy improvement in menstrual characteristics was reported.
Further prospective studies are required to assess the role and success of the various menstrual management options in this population. In particular, prevention of iron deficiency anaemia and reduction of menstrual flow will be of great importance in the developing world where iron deficiency is extremely common and can result in major medical illness and the need for hospitalisation.
Provision of information to medical staff, parents and carers concerning available modalities of intervention to reduce or prevent menstrual flow (and to provide contraception where needed) will offer a significant opportunity to improve physical, psychological, emotional and social health in this group.
Limited data are available regarding the gynaecological needs of adolescents with developmental disabilities and their families. Despite the menstrual characteristics in this population being largely similar to those without disabilities, there is high level of parental anxiety regarding the impact of menses on the care and wellbeing of their disabled child, particularly when the level of disability is severe.
Medical therapies may be required for a variety of reasons, including menorrhagia, menstrual hygiene, contraception and management of conventional menstrual problems seen in any adolescent. A family knowledge base and information is lacking in this group, limiting ability to access appropriate interventions. Clinicians, including general practitioners, need to play a proactive and educational role with families and adolescents with disabilities. Further studies are needed to assess the role and success of various management options in adolescents with severe disabilities in particular.
The authors wish to acknowledge the generous assistance of Professor Dinah Reddihough and Ms Sue Reid from the department of Developmental Medicine, Royal Children's Hospital, for providing them with access to their patient database and for advice, to Dr Susan Donath from the Department of Clinical Biostatistics and Epidemiology, for statistical advice and analysis and to Ms Janne Pitkin for assistance with questionnaire collation.
Competing interests None.
Ethics approval This study was conducted with the approval of the Royal Children's Hospital, Melbourne, Australia.
Provenance and peer review Not commissioned; externally peer reviewed.
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