SymTrend

Use of SymTrend to Monitor Cancer Treatment

Gary was a sixty year old man with multiple myeloma receiving stem cell transplants and chemotherapy with post-treatment follow-up. His treatment for multiple myeloma included intensive doses of chemotherapy for six months and procedures for first harvesting stem cells, and then transplanting them back into him. The cancer and treatments caused gastrointestinal problems, severe pain, weight loss, hair loss, fatigue, and an inability to work.

He used SymTrend for several years during periods of treatment, remission, and recurrence, including recording symptoms, medications, and mood multiple times per day. These could be charted in multiple ways to evaluate the course of the disease and the impact of treatments.

Assessing Anxiety in Asperger’s Syndrome

A recently published study of adults with and without Asperger's syndrome (AS) reports that the group with AS were more anxious than the comparison group, even though the percent with a diagnosis of anxiety was not different*. The AS group also spent more time ruminating on a particular thought. The study, reported by researchers in the UK, had adults with AS and neurotypical adults (NT) use software on Palm Pilots to record their thoughts and feelings in real time 10 times a day for 3 days.

Method: Thirteen questions were included in the Palm questionnaire; they included checklists, multiple choice questions, visual analogue rating scales, and text entry screens (the screens above are SymTrend screens based on those in the paper). Thoughts were categorized by focus, content and subjective appraisal: (1) Was the thought internally or externally directed (i.e., what percentage of thoughts were coded as being self-focused, for example, 'I was thinking about a pain in my leg' or externally focused, for example, 'I was thinking about the game I was playing')? (2) Did the thought involve another person (i.e., did the content of the thought concern another person or not)? (3) Was it an anxious thought (i.e., percentage of thoughts coded as anxious)? (4) What was the thought type (i.e., how did the participant appraise the thought, for example, pleasurable, worrying, neutral)? (5) What was the form of thought (i.e., how did the participant describe their thought, for example, like an image, like someone was talking to me).

Findings: The AS group reported significantly more worrying thoughts, more rumination (thoughts lasting longer than 5 min), and confusing thoughts; these were all associated with anxiety. Anxious thoughts in both groups were typically related at times when the state was "anxious". Those with AS, however, also reported anxiety without the presence of an "anxious thought". Those with AS reported more self-focused thoughts than the NT group and more "confusing" thoughts. The authors suggest that the data from the AS group "may relate to a relatively impoverished understanding of their own minds (Happé, 2003**)"; they "may have difficulty recognizing and appraising their own cognitions in relation to their feelings and instead report them in relation to the task they were doing". The AS group "may be able to appraise thoughts as anxiety provoking, but are much less practiced at discussing and articulating their thoughts."

Comments: As they mention in their paper, "despite … reports indicating high levels of anxiety and stress in this group, there is very little research detailing the content, frequency and severity of anxiety…" This paper contributes information in these areas. They are correct to assert that their data can form the basis of clinical interventions. The comment about "impoverished understanding of their own mind" (cited from Happé) may be over-stated. The technology used indicates these data were collected more than five years ago. Researchers at SymTrend (including this author) were collecting similar data at the same time, with the original SymTrend software on Palm personal digital assistants (PDAs); these data have not yet been published. SymTrend research (see post on April 16) and the work of clinicians at Aspire (Aspire Poster 1, Aspire Poster 2) involved collecting thoughts and feelings over longer periods of time than three days. Our work demonstrates that this self-monitoring can serve as an intervention in and of itself. Graphs of feelings ratings show improvements in mood before interventions began (mindfulness from the mere act of rating improves the feelings state). Feedback and discussions about anxious ratings and triggers of anxious ratings can improve coping with typical triggers of anxiety.

* Hare, DJ, Wood, C, Wastell, S, and Skirrow, P. (2014) Anxiety in Asperger’s Syndrome: Assessment in real time.

Tracking Impact of Botox Treatment

Summary. A 52-year old woman with traumatic brain injury (TBI) was treated with botulinum toxin (Botox) blocks to her neck muscles to manage her chronic intractable headache pain. SymTrend was an important element in supporting her treatment plan and monitoring results. SymTrend acted as a helpful memory aid as well, since she had difficulties concentrating and remembering events as a consequence of her TBI.

Background: Standard prescription medications had not been completely effective in reducing her pain. The treatment plan called for Botox blocks every 12 weeks. Her doctor recommended use of a custom SymTrend electronic diary to meet two objectives: 1) determine how much pain relief occurred and for how many weeks, and 2) determine if the pain reduction was accompanied by additional benefits such as decreased fatigue, improved concentration, and greater emotional well-being.

When and How Should Behavioral Data Be Captured in the Classroom?

Recordings about classroom behavior are most accurate when done right after the behavior occurs. Recording at the end of a lesson is next most accurate and recording 3 hours later is the least accurate. These statements seem intuitive. However, a careful study described in a recent paper* found that many factors affect these differences in accuracy.

Methods: The study involved special educators recording about a single target behavior such as crying, eye poking, and "talk-outs". The educators noted the occurrence of the behavior either 1) right after it happened, 2) after the activity in which it happened finished, or 3) a few hours later. Recordings were made on paper forms. Four teachers participated and each recorded about two of their middle/junior high students. They received training on recording and treatment fidelity. Their recordings were compared to those made by one of the investigators using videotaped observations. The investigators randomly varied under which of the three conditions the teacher recorded for each of two recordings per day. Teachers recorded data on student performance across 15 days with 10 sessions for each condition.

Results: All four teachers met the necessary 85% agreement level for their data to be considered accurate for at least one student during either Conditions 1 or 2. Three teachers did not record accurate data for their other student during these same conditions. Each had higher levels of agreement among some conditions than others. Not all teachers consistently recorded accurate data for both of their students across conditions. An important factor impacting accuracy was the overall frequency of the behavior. Other factors that also had an impact include: treatment fidelity, medication or other treatment changes, and the salience of the behavior during the instruction.

Conclusions: The authors conclude: "Although immediate direct observation recording is espoused as the most accurate data recording method, teachers did not consider it the most feasible particularly because of the barriers they face when using this data recording method. Prior research provided evidence to suggest special educators can engage in accurate delayed recording; however, the delay between behavior occurrence and recording should be 30 min or less…Future research should consider choosing target behaviors that are less prone to salience and do not pose difficulties for teachers to maintain high levels of treatment integrity and reliable data recording (e.g., moderate frequency behaviors)."

Comment: The study did not include a condition with electronic data capture. SymTrend screens (above) can be used to capture data in the moment (left) or at the end of the lesson/3 hours later (right). When done in the moment the teacher taps the screen each time a behavior occurs and the screen then refreshes. This cannot be done as the teacher is doing a lesson; a second observer would enter the data. The teacher could use a "clicker" to record each time a behavior occurred and then enter the total on the screen on the right after the lesson is over. Teachers who have used SymTrend preferred the accuracy of data recording by paraprofessionals not immediately involved in the lesson. Transcription errors sometimes occurred when copying from paper tally sheets to screens like the one on the right. Transcription from clickers provided intermediate accuracy, when available.

What To Do About Behavior Breakdowns 1. Agree on a plan ahead of time. When you are going to a place that you know sets your child off or are going at a time when meltdowns often occur, be prepared with things you and your child agree will calm him/her down. 2. Acknowledge the anguish. In a calm voice, tell the child you understand why he/she is upset - what you see in the situation that is difficult. Have your child rate the severity of the problem. 3. Set the bar. Use a visual support to define the time when the child can get something (such as leave the store) or when the child can get something liked (such as a snack or access to a toy). Another visual support is a written schedule indicating what will happen when the child stops the meltdown. 4. Get punchy. If you are at home, have your child punch a pillow or another soft, save object. If away, hopefully you have brought something like that - some sort of fidget toy with you.

Smartphone Intervention for Schizophrenia

A report of a successful trial with a real-time smartphone support system appeared recently in Schizophrenia Bulletin*. The study demonstrates the positive potential of care models that extend treatment beyond the confines of a clinic. The "FOCUS" intervention is for people with psychotic disorders who may have cognitive impairment, psychotic symptoms, negative symptoms, and/or low reading levels. Use of the system led to significant reductions in psychotic symptoms, depression, and general psychopathology.

Methods: FOCUS provides users with many prescheduled and on-demand tools. Thirty-three individuals used the system over a 1-month period, an average of 5.2 times/day. Every participant had screens for medication adherence. Participants and researchers selected two additional tools, based on preference and need, from those that help manage symptoms, mood, medications, social functioning and sleep. The screens on the top row in the graphic above are from the article; the screens below are from a similar untested application in SymTrend. Participants received training on the use of the application and on the Motorola Droid 4 phones. The system prompted users 3 times daily, on one of each of the 3 treatment targets. Once signaled, users can decide to engage or ignore the prompt. The system guides the user through a daily assessment and offers use of the pre-determined intervention. Users could also use other tools for support whenever they needed them. The app automatically uploaded response data to a secure study server when wireless connectivity is available. Researchers and authorized clinicians can view user responses continuously on a web-based dashboard.

Findings: Participants completed an acceptability/usability questionnaire after completion of the study. Ratings were very positive. Over 87% reported it was easy to and helped manage symptoms. Use of the system led to significant reductions in psychotic symptoms, depression, and general psychopathology. There were no significant changes in beliefs about medications or in sleep difficulties. The FOCUS system used in the study was a 1-month adjunct to in-person services; it has not been evaluated as a stand-alone system or for a longer period. There also was no control group for this study.

Coping, Daily Hassles, and Behavioral/Emotional Problems in Adolescents with High-Functioning Autism/Asperger Syndrome

Adolescents with High-Functioning Autism and Asperger Syndrome (HFA/AS) are more likely to experience stress than their neurotypical peers. They tend to derive stress from a greater number and more idiosyncratic variety of everyday events (daily hassles). Stress often triggers or worsens core symptoms of HFA/AS, such as stimming and rigid thinking. The coping strategies used by adolescents with HFA/AS to deal with daily hassles and the relationship between those strategies and behavioral/emotional problems were discussed in a recent article by the Australian group cited in July 12th's post*.

Methods: Adolescents 12-18 years of age used the group's mobiletype software, which is similar to SymTrend. The e-diary used enabled them to assess stressors and coping styles multiple times daily for two weeks (the screens above show how this might appear in a SymTrend e-diary). They reported on use of both behavioral and cognitive coping strategies:

1. Primary control engagement coping, e.g., "Talked to someone about it" (behavioral) and "I thought of ways to solve it" (cognitive). 2. Secondary control engagement coping, e.g., "Hung out with my friends to distract myself" (behavioral) and "I just gave up and accepted it" (cognitive). 3. Disengagement coping, e.g., "Drank alcohol or used drugs" (behavioral) and "I felt like it was someone else’s fault" (cognitive). 4. Involuntary engagement, e.g., "I felt it was all my fault" (cognitive). 5. Involuntary disengagement, e.g., "Didn’t do anything" (behavioral) and "My mind went blank, I couldn't think at all" (cognitive).

Parents and adolescents also completed paper questionnaires at the beginning and end of the study. These instruments included items about the adolescent's daily hassles and coping. They also asked about the incidence of behavior and emotional problems. A principle focus of one of their papers about this work was finding a link between coping strategies and the incidence of behavioral and emotional problems.

Results: Both parents and adolescents reported, in the Response to Stress Questionnaire (RSQ), that the adolescents used all forms of coping. The adolescents, however, reported less frequent use of each strategy in their e-diaries. More similarity between parent/child assessments was evident than is typically found in this type of study, but there were some differences. One important difference was that parents reported less frequent use of Strategy 2 "secondary control engagement coping" than the adolescents reported.

The use of Strategies 1 and 2 above did not correlate with the presence of behavioral and emotional problems. The other three types of coping strategies were all individually associated with behavior and emotional problems. The perceived frequency of hassles was not a significant predictor of behavior and emotional problems, when based on the self-reported RSQ data, but was a factor influencing the use of Strategy 3, based on mobiletype data.

Conclusion: Given the high rates of behavioral and emotional problems in this population, the authors feel that a valuable target for interventions would be to address their styles of coping with stress.

*Khor, AS, Melvin, GA, Reid, SC, Gray, KM. (2014) Coping, Daily Hassles, and Behavior and Emotional Problems in Adolescents with High-Functioning Autism/Asperger’s Disorder. J. Autism Dev Disord. 44: 593-608.

Group Cognitive Behavior Therapy (CBT) Program Helps Reduce Depression/Stress Among Young People with Autism Spectrum Disorders (ASD)

A recent paper* reported benefits of group CBT on depression and stress management. Clinical researchers in Burwood, Australia developed a nine-week "think well, feel well and be well" program with two-hour sessions each week.

Sample: Participants were 15-25 years old. They had a diagnosis of ASD, but were able to understand abstract concepts and recognize their own thoughts. They also reported symptoms of depression and anxiety on standardized questionnaires.

Intervention: The program included lectures, diaries, homework, and group discussions. The content included: identifying stressful situations; recognizing stress in one's bodies and emotions; seeing the relationships between events, thoughts and feelings; and coping with stress. Clinicians at Boston University developed the SymTrend screens above for a similar CBT program to enable practice recognizing stress and stressful situations.

Findings: Participants who were initially symptomatic reported significantly lower depression and stress scores after the program in comparison to those on a waiting list. There were no significant changes in anxiety related symptoms in this study; other work has found CBT can help reduce anxiety. The benefits were maintained at 3 and 9-month follow-up.

Self-monitoring Using Mobile Phones in the Early Stages of Adolescent Depression A study conducted in Australia* found that self-monitoring of daily activities, mood, and stress on mobile phones resulted in greater emotional self-awareness, which in turn decreased depressive symptoms. The authors see mobile self-monitoring as a first step, preventive measure for teens at risk.

Sample: Participants were between 14 and 24 years with mild or more mental health concerns. The study had two groups: Intervention (monitored mood, stress, and daily activities) and Comparison (monitored only daily activities).

Procedure: Participants used mobiletype, a program developed by the Murdoch Children's Research Institute on phones lent to them. They were prompted to complete an entry by a beep within four blocks of time. Data were uploaded to a website. Intervention participants recorded: current activities, location, companions, mood, recent stressful events, responses to stressful events, alcohol/cannabis use, sleep, exercise and diet. Comparison participants only recorded current activities, location, companions, sleep, exercise and meals. The doctors who recruited the patients could view the data with the patients.

Findings: Those who monitored mood, stress, and coping strategies increased awareness of emotions. An increase in emotional self-awareness was associated with a decrease in depressive symptoms.

Conclusions: "Self-monitoring techniques may provide an alternative to watchful waiting as a first-step intervention in the stepped-care approach. Mobile phones are ideally suited to this purpose." Use of the mobiletype program can help young people understand and manage mild depressive symptoms. Detailed information about patients' recent mental health status is available to clinicians in an easy-to-read format, Tracking the data saves time in appointments and allows progression to more intensive second-step interventions when needed. Young people often do not recognize mental health problems and instead attend clinics for somatic complaints rather than mental health symptoms. "Self-monitoring by young people with underlying somatic complaints may increase their emotional self-awareness and help them initiate treatment for depression."

Binge/Purge Thoughts in Nonsuicidal Self-Injurious Adolescents

The post on April 10th presented findings from a study in which 30 adolescents used SymTrend to record self-injurious thoughts and behaviors*. In that study, participants could report a variety of self-injury thoughts, including: suicide, cutting, drinking, bingeing and/or purging (BP), risky sex, and drug use. A follow-up paper** compared the thoughts and behaviors of a subset of the participants, who had reported binge/purge thoughts. One finding reported in the follow-up is that "BP thoughts are common and may be a strong indicator that a NSSI (nonsuicidal self-injury) adolescent is experiencing concurrent self-destructive thoughts." This post displays a novel table in SymTrend that helps easily view the contexts in which each type of thought occurs. The presence of the BP thoughts should alert a clinician monitoring the teen's BP behavior to watch out for concurrent NSSI thoughts.

The paper closely analyzed the self-reports of three sub-groups: those who 1) had both binge/purge and nonsuicidal self-injury (BP + NSSI) thoughts, those who had just binge/purge thoughts (BP), and those who had just NSSI thoughts (NSSI).

BP thoughts were reported by 73% of the participants. Of the participants who had a BP thought, 59% actually engaged in BP behavior. Bingeing thoughts were 3-4 times more likely to be reported at the same time as NSSI thoughts than alone. Purging thoughts were 12 times more likely to occur with other NSSI thoughts than alone. The presence of peers preceded BP thoughts more frequently than NSSI thoughts. Those with BP thoughts were also more likely to be already eating when the thoughts arose. Criticism was a more salient trigger for BP thoughts (with or without NSSI thoughts) than for thoughts about NSSI alone. Negative emotions (e.g., sadness, anxiety, anger) were present both before and while having BP and NSSI thoughts. The table above has been sorted by the intensity of the urge to self-injure. Thoughts of direct self-harm were more often experienced at moderate intensity than bingeing/purging. Read the table by looking at the Self-Injury Thoughts and Self-Destruction Thoughts columns. Then move across that row to see whom the person was with at the time of the thought and what led to the thought. Thoughts about bingeing and purging commonly occurred with others around, whereas thoughts of direct self harm and attempt suicide more often occurred when alone.

These self-reports can be used to design and guide treatments. The apps that contain data collection screens can deliver cautionary or helpful messages in response to the report of a self-injury thought.

*Nock, MK, Prinstein, MJ, & Sterba, SK (2009) Revealing the form and function of self-injurious thoughts and behaviors: a real-time ecological assessment study among adolescents and young adults. J. Abnormal Psychology. Vol. 118, No. 4, 816-827.

Distinction between Tantrums and Meltdowns A parent (momfautistic) once posted on an autism support blog distinctions between tantrums and meltdowns. Temper Tantrums: 1. GETTING HURT: The child with a tantrum will take precautions to be sure he/she won't get hurt. 2. WATCH FOR REACTION: The child throwing a tantrum will look around to see if the behavior is getting a reaction. 3. USE SITUATION TO OWN BENEFIT: The child will attempt to use the situation to his or her own benefit. 4. TEMPORAL PATTERN: When it is resolved, the tantrum will end as suddenly as it began. 5. WHO IS IN CONTROL: A tantrum will give you the feeling that the child is in control, although he would like you to think he is not. 6. GOAL: A tantrum is thrown to achieve a specific goal and once the goal is met, things return to normal.

Melatonin: An Option for Improving Sleep in Children with Autism Spectrum Disorder (ASD) Previous posts discussed sleep problems in children and strategies for improving their sleep. If the non-medication strategies in the previous post don't work, other options are available that are relatively risk free. Studies support the use of melatonin to reduce the time it takes for children with ASD to fall asleep (1, 2). Some studies suggest that melatonin increases total sleep time as well (2). Get more details about two scientific papers about melatonin use with children with autism below. Check with your child's doctor before starting melatonin to see if there are any reasons why you should avoid it. Conduct a Melatonin Study with Your Child Yourself We recommend that you follow steps similar to these studies when you give your child melatonin.

1. Parents were given a sleep diary to keep track of their children's sleep patterns. They started entering data before the melatonin was given. You can use SymTrendSleep for that purpose. Record the time your child went to bed and fell asleep. Record the number of times awakened during the night. Record the time your child got up in the morning and how sleepy he/she is. If you have time, also jot down what happened before bedtime that might have made falling asleep more difficult (such as activities or food). 2. The Vanderbilt senior researcher then trained parents to establish a regular bedtime and wake time. You should follow the recommendations in the previous post for doing that. 3. Start with a small dose of melatonin – 1 mg. A satisfactory response was defined in the research as falling asleep within 30 minutes in five or more nights/week for 3 weeks. If that response did not occur, the melatonin was increased to 3 mg for 3 weeks. 4. Jot down anything unusual that occurs after your child starts taking melatonin – possible side effects of the supplement. Most studies find melatonin is tolerated well. If you think something has changed for the worse, discontinue the melatonin and see if it changes back. Consult a professional.

Identification and Evaluation of Sleep Problems in Children and Adolescents Sleep problems during childhood are relatively common (20% to 30% in some reports about preschoolers and up to 40% in self-reports of adolescents). They are a significant source of stress for families. They also may underlie behavior issues and poor performance at school. It is important to define the problem before treatment starts. Several tools are available in sleep, nursing and pediatrics journals for professionals to use to screen for and diagnose sleep problems. Parental completion of a sleep diary simplifies the diagnosis. SymTrend Sleep and SymTrend ADL are apps designed to provide professionals with most of the information they need. Some sleep features were excluded to simplify and shorten data entry. Parents can bring the reports generated by the software to a visit. One screening tool is called the "BEARS" sleep screening tool (1). It is divided into five major sleep domains: Bedtime problems, Excessive daytime sleepiness, Awakenings during the night, Regularity and duration of sleep, and Snoring. The authors suggest asking questions about the five areas at each well child visit. The SymTrend diaries include questions in all of these domains except Snoring. Information collected in the products about daytime sleepiness/napping is limited. The Sleep Committee of the Autism Treatment Network (ATN) developed a "practice pathway" to guide professionals through the identification, evaluation, and management of insomnia in children and adolescents who have autism spectrum disorders (ASDs) (2). Their report lists seven available questionnaires, including the BEARS, for the identification step. The second step involves the evaluation of insomnia. Their report also includes a questionnaire to help identify medical conditions that can affect sleep. It includes questions about stomach and bowel issues, seizures, asthma and breathing, pain or skin problems, nutrition, and muscle tone. They also recommend looking for psychiatric conditions and medication side effects. The SymTrend ADL product includes general health questions. The next blog posting will discuss the third step, management of insomnia. Management need not await the completion of an evaluation. A frequently cited place to start is education about "sleep hygiene", or good sleep habits. Language and behavioral deficits of children with ASD may make it more difficult to establish good sleep habits.